Traumatic Brain Injury in the United States Assessing Outcomes in Children

Traumatic Brain Injury in the United States:

A sse ss in g O u tco m es in C h ild re n

Summary and Recommendations from the

Expert Working Group Atlanta, GA

October 26-27, 2000

EditorJean A. Langlois, Sc.D ., M.P.H.

Epidem iologist

Division of Acute Care, Rehabilitation Researchand Disability Prevention

National Center for Injury Prevention and Control

D epartm ent o f Health and Hum an Services Centers for Disease Control and Prevention

This report is a publication of the National Center for Injury Prevention and Control

of the Centers for D isease Control and Prevention.

C enters for D isease Control and PreventionJeffrey P. Koplan, M.D., M.P.H., Director

N ational C enter for Injury Prevention and ControlSue Binder, M .D., Director

D ivision o f A cute C are, Rehabilitation Research and Disability PreventionDaniel Pollock, M.D., Acting Director

Acknowledgments

T'he editor wishes to acknow ledge the valuable contributions of the following

people to the meeting on Assessing O utcom es of Traumatic Brain Injury In

Children and Youth and the preparation of this report: Shanthi Am eratunga,

Patricia Allen, Allan Bergman, Doug Browne, Victor C oronado, Karen Gotsch,

Melissa McCarthy, Jane M cDonald, Audrey Reichard, Virginia Ross, Anbesaw

Selassie, David Thurman and the staff of the Office of Communication Resources,

the National Center for Injury Prevention and Control.

Sincere thanks also go to the Maternal and Child Health Bureau, the Health

Resources and Services Administration for distributing this report through its

National Maternal and Child Health Clearinghouse.

^roup participantsS h a n th i A m e r a tu n g a , MB.Ch.B., M .P.H., F.R.A.C.P.Senior Research Fellow Department of Community Health Faculty of Medicine and Health Science The University of Auckland Auckland, New Zealand

A lla n B e r g m a nPresident and CEOThe Brain Injury Association, Inc.Alexandria, Virginia

N a n c y C a rn ey , Ph.D.Assistant ProfessorDepartment of Emergency MedicineSchool of MedicineOregon Health Sciences UniversityDirector, Oregon Traumatic Brain InjuryModel System ProjectPortland, Oregon

J e a n n e D ise -L e w is , Ph.D.Associate ProfessorUniversity of Colorado Medical SchoolDirector of Psychology Services,Department of Rehabilitation MedicineThe Children's HospitalDenver, Colorado

A r le n e G r e e n s p a n , Dr.P.H., P.T. Assistant Professor Center for Rehabilitation Medicine Emory University School of Medicine Atlanta, Georgia

S te p h e n M. H a le y , Ph.D., P.T. DirectorCenter for Rehabilitation Effectiveness Sargent College of Health and Rehabilitation Sciences Boston University Boston, Massachusetts

J e a n n e M. L a n d g r a f , M.A. Co-Founder, Vice President and Chief Scientific Officer HealthAct and outcomesPro.com Boston, Massachusetts

J e a n A . L a n g lo is , Sc.D ., M.P.H. (moderator)EpidemiologistDivision of Acute Care, Rehabilitation Research and Disability Prevention National Center for Injury Prevention and ControlCenters for Disease Control andPreventionAtlanta, Georgia

M e lis sa M cC arthy, Sc.D.Assistant ProfessorDepartment of Emergency MedicineJohns Hopkins University School ofMedicineBaltimore, Maryland

T errie P rice , Ph.D.DirectorNeuropsychology and Social Services The Rehabilitation Institute of Kansas City Kansas City, Missouri

B o n n ie T o d is , Ph.D.Associate Professor Teaching Research Western Oregon University Eugene, Oregon

K eith Y e a te s , Ph.D.Associate ProfessorDepartment of PediatricsCollege of Medicine and Public HealthThe Ohio State UniversityColumbus, Ohio

*7able of Contents

Executive Sum m ary.............iii

Background...............1

D esign ing Studies that A ssess Longer-Term TBI O u tco m es.............. 4

A vailable M easures for A ssessing TBI O u tco m es.............9

R ecom m endations for Additional R esearch............14

O ther M ethodological Issues in A ssessing TBI O u tco m es............16

O ther TBI Issu es..........21

A ppendix A — Overview of Available Outcome Assessments........... 23

A ppendix B — Slides from Expert Group Presentation........... 29

A ppendix C — Data from the South Carolina Surveillance System..........36

A ppendix D — Other Resources to Guide Selection of Research Topics........... 4 4

A ppendix E — Overview of TBI Surveillance Activities Funded by the CDC..........4 9

II

Executive «Nummary

tfiis report summarizes the com m ents, suggestions, and recom m endations of a

working group convened by the Centers for D isease Control and Prevention (CDC)

on assessm ent of Traumatic Brain Injury (TBI) outcom es in children and youth. It is

intended for researchers, public health professionals— including those from state

health departm ents— and advocates interested in furthering research on outcom es of

TBI in children.

TBI is often described as the leading cause of disability in children, but data to

support this assertion are lacking. W e know that each year an estimated 3 ,0 0 0

children and youth die from TBI; 2 9 ,0 0 0 are hospitalized; and 4 0 0 ,0 0 0 are treated

in hospital em ergency departments. Currently, no population-based studies of the

outcom es of TBI am ong children and youth exist to provide national estim ates of TBI-

related disability and docum ent the need for services.

On O ctober 2 6 and 2 7 , 2 0 0 0 , the National Center for Injury Prevention and Control

at the CDC held a meeting of researchers, advocates and other professionals from

the U.S. and New Zealand to discuss "Methodological Issues in Assessing O utcom es

of TBI in Children and Youth." The primary purpose of this meeting was to

determ ine the feasibility and appropriate m ethods for conducting population-based

follow-up studies of outcom es of TBI in children and youth.

Meeting participants identified key research topics and variables to m easure in

assessing longer-term outcom es of TBI in children and youth (ages 0 -1 6 years).

They reviewed several conceptual m odels of disability, including the Institute of

M edicine Model and the World Health Organization M odel, that could provide a

framework for designing appropriate studies of TBI outcom es. They also discussed

the advantages and shortcomings of available m easures for assessing these

outcom es. Finally, the working group described the challenges in designing and

implementing studies on TBI in children and youth and recom m ended ways to

address those challenges.

M eeting participants recom m ended that further research be done to exam ine

physiological responses to brain injury, patterns of recovery and treatment and costs

of TBI. The group suggested that the field needs to explore the applicability of

various types of research, including qualitative research. Som e exam ples suggested

included focus groups and individual interviews. Meeting participants also

recom m ended m ethods for improving m easurem ent, data analysis and terminology

used in the study of TBI.

1

backgroundM e th o d o lo g ic a l I s s u e s in A s s e s s in g O u tc o m e s o f T ra u m a tic B rain Injury (TBI) in C h ild ren a n d Y outh

Purpose o f this ReportOn October 26 and 27, 2000, the Centers for Disease Control and Prevention (CDC) convened an expert working group to discuss “Methodological Issues in Assessing Outcomes of Traumatic Brain Injury in Children and Adolescents.” This report documents the comments and suggestions of the working group.

M eeting G oal and O bjectivesThe goal of the meeting was to determine the feasibility and appropriate methods for conducting a population-based follow-up study of outcomes of TBI in children and youth.The meeting objectives were to

■ Identify key dom ains and variables to m easure in assessing longer-term outcom es of TBI in children and youth (ages 0 -1 6 years).

■ Discuss the advantages and shortcomings of available m easures for assessing these outcom es.

■ Highlight the need for other types of research on TBI in children and youth.

■ Discuss m ethodological issues in assessing TBI outcom es in this population.

M eeting Participants and ProcessThe eleven participants included researchers, advocates, psychologists, educators and other professionals from the United States and New Zealand. With input from the Brain Injury Association, CDC selected invitees for their potential to contribute to a greater understanding of the important outcomes of TBI in children that need to be studied or the methods appropriate for collecting information about those outcomes. Two of the participants are the developers of key measures of health status in children.

For each objective, CDC staff prepared background materials for discussion; selected meeting participants assisted in these preparations. The meeting began with presentations of preliminary CDC multi-state surveillance data and South Carolina surveillance data to provide background information on the importance of TBI among children and youth as a public health problem (See Appendix B and Appendix C ). For the remainder of the first day, participants discussed the background materials. A professional note taker recorded participants’ comments and suggestions. On the second day, the moderator presented a synthesis of the suggestions for review and revision by the participants.

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This report documents the final summary of the comments and recommendations. For some sections, more detailed definitions, references and other materials have been added to clarify the information from the meeting.

TBI as a Public Health Problem in Young PeopleAmong children and youth aged 0 to 14 years in the U.S.:Each year traumatic brain injury results in an estimated

■ 3,000 deaths■ 29,000 hospitalizations■ 400,000 emergency department visits.*

Unintentional injury is the leading cause of death, and traumatic brain injury is the type of injury most often associated with death.The annual total of TBI-related deaths is

■ More than 6 times the number the number of deaths related to HIV/AIDS*■ 20 times the number of deaths from asthma**■ 38 times the number of deaths from cystic fibrosis.***

* CDC** NCHS, Monthly Vital Statistics Report. Vol. 45, No. 3 (S), September 30, 1996.)*** CDC Wonder

TBI is reported to be the leading cause of disability in young people in the U.S., but the evidence is limited. Most studies of the outcomes of TBI in children and youth are based on case series from selected hospitals or rehabilitation facilities, small regional samples or anecdotal reports.Few studies have followed the same group of children over time. (See Appendix B for additional statistics on TBI in children and youth.)

The N eed for M ore ResearchPopulation-based longitudinal studies provide data representative of the long-term outcomes of all children and youth in a defined area who have had a TBI. They are necessary to allow generalization to the U.S. population of children and youth with TBI. Currently no population- based studies of the outcomes of TBI among children and youth exist to provide national estimates of TBI-related disability and to document the need for services.

CDC has funded such studies, referred to as “follow-up studies” or “outcomes surveillance,” of older adolescents and adults (ages 15 years and older) in two states, South Carolina and Colorado. In each of these studies, a sample of people hospitalized with a TBI is identified and given a telephone questionnaire at yearly intervals to find out about TBI outcomes, including disability. For more information about CDC-funded TBI studies, see Appendix E. When the first of these studies was initiated in 1994, children were not included, in part, because few measures were available. The difficulty of measuring the effects of the injury in the context of naturally occurring developmental changes contributes to the challenge of assessing outcomes of TBI in young people.

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The Brain Injury Association, the Federal Advisory Committee for Injury Prevention and Control and a wide range of researchers and other professionals in the field have long argued for a population-based follow-up study of outcomes of TBI in children. In its October 2000 reauthorization of the TBI Act of 1996, Congress emphasized the need for CDC to support TBI studies among all age groups. This meeting was conducted to obtain advice regarding the feasibility of conducting a CDC-funded study of TBI outcomes in children and youth.

A N o te ab ou t Term inologyChild vs. Pediatric: Meeting participants advocated using the term child because pediatric is associated with the medical model. Reference to child encourages consideration of broader, longer-term issues, not only medical concerns. Researchers and professionals should avoid using pediatric especially when referring to longer-term outcomes of TBI in children.

Youth vs. Adolescent: Participants referred to the term youth over teenagers or adolescents because it is more widely used in educational and other settings.

Caregiver vs. Parent: The term caregiver may be more appropriate than parent because in many cases the person caring for the child is someone other than a parent.

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- d e s i g n i n g S t u d i e s t h a t A s s e s s L o n g e r - T e r m T B I

O u t c o m e s i n C h i l d r e n a n d Y o u t h :C o n c e p tu a l M o d e ls , O p e r a t io n a l M o d e ls a n d O th er R e so u r c e s

O bjectiveT̂his section provides background information about selection of a conceptual model and

development of an operational model as well as other resources available to help guide the study design.

C onceptual M odelsMeeting participants mentioned several conceptual models that could provide a framework for designing appropriate studies of TBI outcomes. It is important to select an appropriate conceptual model before finalizing an operational model and selecting specific measures.

■ Institute of M edicine (IOM) ModelThe original IOM model links the four main components of the disabling process-pathology, impairment, functional limitation and disability. The modified IOM model removes disability from this chain to emphasize that disability is not an individual characteristic but a result of interaction between an individual and his or her environment. (Brandt EN Jr., Pope AM, editors. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: National Academy Press; 1997).

■ World Health Organization (WHO) Model (ICIDH-2)This W HO model of disability addresses both the individual factors, including body systems, impairment, activity, and social participation, and the role of the environment. The model is still under revision and has not yet been adapted for children, although work is in progress. Meeting participants recommended that CDC consider adopting this model, which is being applied to disability research internationally. (ICIDH-2: International Classification of Functioning, Disability, and Health Website. Available at: www.who.int/icidh/. Accessed January 10, 2001; Simeonsson RJ, Lollar D, Hollowell J, Adams M. Revision of the International Classification of Impairments, Disabilities, and Handicaps Developmental Issues. J Clin Epidemiol 2000;53:113-124.)

■ Family Systems ModelThis model assesses the family environment, including structural dimensions such as family size and family composition, as well as qualitative aspects such as family stressors, sources of internal and external support, and areas of strength and need. (Kalesnik, J. Family assessment. In Nutall EV, Romero I, et al. editors. Assessing and Screening Preschoolers: Psychological and Educational Dimensions (2nd ed.). Boston: Allyn and Bacon, Inc; 1999. pp. 112-125.)

■ Developm ental ModelsA developmental model is a framework that recognizes a wide range of factors including the intricate matrix of a changing child and environment, evolving familial and societal expectations, and the link between disrupted and normal development.

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(Pynoos RS, Steinberg AM, Wraith R. A developmental model of childhood traumatic stress. In: Cicchetti E, Cohen DJ, editors. Developmental Psychopathology. Vol 2: Risk, Disorder, and Adaptation. Wiley series on personality processes. New York: John Wiley and Sons; 1995. pp. 112425. Brett AW, and Laatsch L. Cognitive rehabilitation therapy of brain-injured students in a public high school setting. Pediatric Rehabilitation 1998;2:27-31.) Consideration of developmental models is critical in designing studies of longer-term outcomes of TBI in children so that the studies address not only the effects of the injury but also how these effects relate to development.

Models of disability (IOM or WHO) are the most useful as overall guides for the study design. Family systems and developmental models suggest key areas to be considered for inclusion in the study.

O perational M odelsOperational models are one-page summaries of topics and variables to consider in planning studies of outcomes of TBI in young people. Meeting participants reviewed and discussed draft operational models, which were prepared before the meeting. Figure 1 (General Model) and Figure 2 (Service-Related Model) show the topics and related variables recommended by the working group.

These topics and variables were suggested by researchers, advocates and professionals. It is also important to conduct qualitative research, such as focus groups, with families and children or youth with TBI to understand the key issues from their perspectives. Minority populations should be included in qualitative studies to increase understanding of the unique experiences and service needs of these subpopulations.

To date, studies have focused largely on determinants of secondary conditions and adverse outcomes, but studies must also be developed to identify factors related to good outcomes.

O ther R esourcesMeeting participants mentioned several other resources that could be used to guide selection of research priorities. These resources include:

■ Healthy People 2010 Health Objectives for children and people with disabilities■ Declarations of children’s rights■ HRSA/Maternal and Child Health Bureau rights of the child■ United Nations Convention on the Rights of the Child.

To read portions of these documents, see Appendix C of this report.

M ore A bout th e D om ains for A ssessing Service N eed sParents and advocates report that appropriate services for children and youth with TBI are lacking. Studies of outcomes of TBI among this population should document the needs for services and the barriers to receiving them. For that reason, meeting participants developed a separate operational model specifically for these issues (Figure 2).

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For clarification, a more detailed description of some of the important barriers that were discussed follows below:

■ Lack of referrals made by healthcare providers.■ Caregivers not aware of available services.■ Lack of appropriate identification of TBI as the underlying reason for the need for the

service or misidentification (e.g., instead of being identified as having a TBI, the child is diagnosed as having a learning disability).

■ Lack of appropriate services and service providers with expertise specifically in TBI.■ Lack of insurance or inadequate insurance; e.g., an HMO or PPO may not have

appropriate service providers.■ Continuation of pre-injury services; children may tend to receive the same kind of

services after the TBI, even if these services are not appropriate for their specific post-TBI problems.

■ Lack of acceptance of services because they are not perceived as culturally relevant.■ Lack of appropriate educational services; the Individualized Educational Plan (IEP) does

not meet the child / youth's need or schools may tend to identify conditions they know how to manage. Research is needed to determine whether classifying children as having a TBI affects how they are managed in school.

TBI in the U.S.: Assessing Outcomes in Children

Langlois, Ameratunga, McCarthy, Reichard, Coronado Revised 2/14/01

Figure 1: G enera l O p era tio n a l M o d e l fo r O utcom es Studies o f Traum atic Brain In jury in C hildren and Youth

Characteristics and Risk Factors Injury Treatment Status at Year One

Socio-demo- Pre-injury TBI event Post-injury Symptoms/ Environmental/ Functional Secondary conditions & Overallgraphic care sequelae personal mediators limitation other adverse outcomes outcome

Child/youth Medical history Date Acute General Child/youth Activities of Secondary conditions LifeAge History of previous Age at injury Sub-acute health Personal assistance/ daily living Alcohol/substance use satisfactionSex TBI(s) Severity Post-acute Physical/motor supervision (ADLs)/ problem (youth)Race/ethnicity Pre-existing medical Multiple Rehab* Cognitive Special education self-care Depressive symptomsEducation conditions trauma Special ed. Language Mental health services Walking/ Psychiatric problems*Health insurance Alcohol/substance use Circumstances Social Affective Rehab/counseling mobility

(youth) of injury services Behavioral Alcohol/drug abuse Instrumental Other adverse outcomesParent/careaiver General health/quality of Neurologic treatment activities ofAge life Mental health* Awareness of daily living Child/YouthSex Depressive symptoms Self-esteem* disability (lADLs) Decline in grade levelMarital status* Post-traumatic Communi­ Decline in academicEducation* Development stress Family cation performanceEmployment Physical/motor disorder* Information, referral, Leisure/play Special education servicesRelationship to Cognitive case management Driving Behavior problemschild/youth Language/communication

SocialCounseling Social support

(youth) Decrease in social participation Problems with peer/family

Family Affective Family environment/ relationshipsCounty of Behavioral function Change in living situationresidence (ADD/ADHD) (e.g., nursing home)ZIP code Learning disabilities Child/family Change in lifestyle (e.g.,Composition* Health insurance decreased exercise)*Family income Education Socialization Repeat injuryHousing Grade opportunities TBI since dischargeRural vs urban* Academic achievement

Behavior problems Special education services

Employment and personal income (youth)

Livina situation Family environment/ function

Social support

Functional status

Personal/familyincome

Interpersonal violence, neglect

Delinquency Incarceration

FamilyCaregiver burden Family stressChange in marital status of caregiver

Change in caregiver employment*

Change in residence* Economic impact*Impact on siblings*

* Environmental/personal mediators includes factors not covered in other categories and services that may influence functional status and/or decrease the likelihood of secondary conditions/other adverse outcomes, and thus affect the overall outcome. '-I* These factors were added or modified during the meeting.

Langlois, Reichard Revised 2/14/01

Figure 2: O p e r a tio n a l M o d el for S tudying S erv ice N e e d s a n d U se A m o n g C hild ren a n d Y outh w ith TBI

F actors in f lu e n c in g r e c e ip t o f s e r v ic e s

Awareness of existing services Need for services Barriers to receiving services Mediating factors Services received

Need for information Cultural sensitivity*Caregiver lack of knowledge

of TBI (e.g., "My child didn't have a brain injury")* Lack of awareness in

medical community*

"Measured" need (e.g., child reports difficulty performing activities of daily living)

Perceived need (Self-report: child

reports need for services)Observed need

(Proxy report: caregiver or

other reports child's need for services)

Child/Youth/Family Levels Cognitive problems but not

physical impairments* Behavior problems*Lack of or inadequate

insurance*Low incomeLack of transportationLack of family follow-throughPre-injury services*Lack of eligibility*Lack of acceptance of services* Lack of awareness-not

connecting problem to TBI*

Provider/Health/Education Levels Lack of appropriate identification/ misidentification*Lack of referralLimited availability of services in

the community / waiting lists Lack of support within local

education system Lack of specialized services*Lack of awareness-not

connecting problem to TBI*

Advocate/case manager to help with referral to services*

Service coordination Good social support

network*Family income Caregiver education Previous receipt of services

Self-advocacy*

Health Care Level Occupational therapy Physical therapy Speech therapy Medical equipment Adaptive/communication/ mobility

equipment Cognitive rehab.Behavioral intervention Alcohol/drug abuse treatment Mental health services Information, referral & case

management/ service coordination.Preventive services*Respite service*

Education/Community Levels Special education Early intervention Transportation Socialization opportunities Legal assistance Financial assistance Family services, including

family support*Services accessed in school*

General LevelQuality / appropriateness of

services received & available*These factors were added or modified during the meeting.+ From U.S. General Accounting Office. Traumatic Brain Injury: Programs Supporting Long-Term Services in Selected States. February, 1998. Adults with these characteristics encounter substantial barriers in accessing services that will support their reintegration into the community. People with behavior problems are defined as exhibiting unmanageable behaviors such as aggression, destructiveness or participation in illegal behaviors. Without treatment, they are the most likely to become homeless, be committed to a mental institution or be sentenced to prison.

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Available Measures for Assessing Outcomes of TBI in Children and Youth

O bjectiveThis section summarizes existing measures for assessing outcomes and describes their applicability to studies of TBI.

Key CriteriaMeeting participants reviewed key criteria for evaluating the usefulness of currently available measures for assessing outcomes of TBI. These criteria included:

■ D evelop ed for u se with children and youthBecause the problems resulting from TBI in children are unique, most measures designed for adults cannot be effectively adapted for children and youth.

■ Previously used with children/youth with TBIPotentially useful measures that were not developed specifically for this population need to be validated or, at a minimum, pilot-tested first.

■ U seful for m easuring ch a n g e during longer-term follow -upSome measures have ceiling or floor effects (limitations in their ability to detect more minor or more severe problems, respectively). Ceiling effects in particular may limit the usefulness of a measure to assess changes over time, as recovery occurs. Many measures have only been used to assess status at one point of time; thus, their usefulness for measuring change is not known.

■ N orm s/com p arison data availab le for other conditionsMeasures with norms for the general population or that have been used to document outcomes associated with other conditions are very useful for determining the effects of TBI.

■ A ppropriate for th e target a g e groupMany more measures have been developed for use with school-aged children and youth than for very young children. The majority of measures developed for children aged 5 years or younger are developmental measures not specifically designed for children with TBI. Longitudinal research that applies the appropriate measures at each developmental level, but that also tracks important milestones and late emerging deficits from early childhood through older ages, will be especially challenging.

Specific M easuresA wide range of child health and other measures are available. (For tables that summarize the measures, see Appendix A.) However, not all of these measures are useful or appropriate for studying children and youth with TBI.

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Key Measures: The Child Health Questionnaire (CHQ) and the Pediatric Evaluation of Disability Inventory (PEDI)

Prior to the meeting, participants identified two promising measures for assessing outcomes of TBI in children and youth, CHQ and the PEDI. The working group discussed the characteristics of these measures, which are summarized below.

Child Health Questionnaire (CHQ)This summary was presented by Jeanne Landgraf, who developed the measure.

C haracteristics 0 Serves as a generic quality-of-life instrument.0 Assesses physical and psychosocial well being.° Is appropriate for ages 5-17 years; version for ages <5 is

under development.° Measures 14 health concepts.0 Includes 28- or 50-item parent-completed forms.° Includes 87-item child-completed form (a short form is currently

being developed).0 Probes for information about the family.° Includes normative data and has been used in studies of a wide

range of other conditions; thus, it can be used to help estimate the burden of TBI compared to other conditions.

Strengths ° Is specifically developed for children and youth. Provides high reliability.

° Scores can be compared to available norms and benchmarks. ° Allows for parallel reporting of parents and children.

W ea k n esses ° The majority of studies to date using the CHQ have used a cross-sectional design.

° Limited data about sensitivity to change over time are available.° No published studies used it with children with TBI/cognitive

impairment, but some work is currently planned or being conducted (reported by Keith Yeates and Melissa McCarthy).

° CHQ may not be as sensitive as condition-specific instruments.0 Paper and pencil version have normative data; the telephone

interview version is scripted, but normative data are not available.

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Pediatric Evaluation of Disability Inventory (PEDI)This summary was presented by Stephen Haley, who developed the measure.

Original PEDI

N ew Version o f PEDI

Serves as a functional assessment instrument.Is designed for children in active rehabilitation programs or children with severe problems.Is standardized for children between ages 6 months and 7 V2 years.Can also be used in inpatient and outpatient rehabilitation settings with older children who are functioning at lower levels.

Is based on the WHO model of disability.Is being developed for children with brain injury.Is designed for children and youth aged 1 to 18 years.Has an activity scale that extends beyond basic functional skills; intended to examine recovery of basic skills needed for return to the community.Includes a participation scale that emphasizes life roles and assesses levels of participation in the community and school environments.Is designed to be completed by parents or providers; a child- administered form is not available.Is designed for use in the rehabilitation setting.Will allow risk-adjustment to account for variability across institutions.Can be adapted for use in follow-up studies, although not originally developed for such studies.

Selected Clinical MeasuresA wide range of clinical measures is available for assessing outcomes of TBI. The working group discussed the applicability of these measures, some of which were originally developed for use with adults, to studies of children and youth, and the comments are summarized below:

Glasgow Coma Scale (GCS)■ Is a useful indicator of severity, but not for children younger than age 5.■ Scores for the same patient vary depending on when they were collected, e.g., GCS scores

collected by Emergency Medical Technicians (EMTs) before admission are not as reliable as those collected in the ED or hospital. CDC TBI surveillance guidelines recommend use of the first GCS after admission to ED or hospital.

Children's Coma Score■ Is a modification of the Glasgow Coma Score designed to be used in children aged 3 years

and younger.■ Eye opening and motor response subscales are identical to the GCS, but the verbal

response subscale rates behavior/affect in preverbal populations. (Multilingual Resources Assessment Tools. Available at: www.multilingualresources.com/ assessment.html. Accessed January 9, 2001).

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■ Is unclear how widely this score is being used or whether the score represents a significant improvement in the GCS for use with children. More research on this topic is needed.

Abbreviated Injury Score/Injury Severity Score (AIS/ISS)■ Are used routinely in the clinical setting.■ Most recent version (AIS 98) is better than previous versions for assessing children.■ Because of the variability within AIS levels, researchers should consider supplementing

AIS/ISS with Therapeutic Intensity Level, which is used in some clinical settings to determine severity based on the intensity of treatment required by the patient (according to Nancy Carney).

■ The AIS score for the head is highly correlated with GCS and is a useful measure of TBI severity.

Loss of Consciousness (LOC)■ Measures the length of time between injury and when the patient regains consciousness.■ Is strongly correlated with outcomes in children and adults and is a key piece of

information that should be collected.

Length of Post-traumatic Amnesia (PTA)■ Measures the time from when a patient emerges from coma until he or she is no longer

disoriented.■ Appears to be strongly correlated with outcome; however, it is difficult to document

consistently and accurately within a hospital protocol.■ Inter-rater reliability is low; that is, different people report different lengths of PTA.■ Despite limitations, PTA should be collected and reported as accurately as possible.

Rancho Los Amigos Scale■ Is a 7'level scale for assessing early recovery in the brain injury rehabilitation setting.■ Rates behavior, cognitive functioning, and response to the environment.■ Levels range from N o Response (Level I) through Purposeful'Appropriate Responses

(Level VII). Multilingual Resources Assessment Tools. Available at: www.multilingualresources.com/assessment.html. Accessed January 9, 2001).

■ May be useful for research on outcomes but to date has not been used widely or evaluated for that purpose.

Pediatric Trauma Score (PTS)■ Is a composite injury score in which the injured child receives a score of -1 (severely

injured), +1 (moderately injured) or + 2 (slightly injured or not injured) in each of six areas-body weight/size, airway, blood pressure, central nervous system activity, open wounds and skeletal injuries.

■ (Ford EG, Andrassy RJ. Pediatric Trauma: Initial Assessment and Management. Philadelphia: W.B. Saunders Company; 1994).

■ Score is not useful for TBI research because it does not separate head injury from injury to other body regions/functions.

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Neuropsychological/psychiatric tests■ These detailed tests of cognitive and psychological functioning are frequently conducted

by trained professionals.■ Results from these tests are important, particularly to document more subtle deficits, but

they must be done in a clinical setting.

School Performance AssessmentsAssessments of school performance include achievement tests, which measure students’ academic performance, and school function assessments, which assess students’ ability to behave appropriately in the classroom.

Achievement tests■ These tests of academic achievement are not sensitive to TBLrelated problems.■ Thinking and reasoning are not assessed.■ Bright students may do well based on previous learning, thus masking TBI-related

problems.■ Scores may improve even as behavior worsens.■ Achievement test results, if available for review, might provide some useful information

about previous performance; however, meeting participants did not strongly recommend including them in studies assessing longer term outcomes of TBI.

School function assessments■ These checklists are specifically designed to assess functioning in the classroom setting.■ They are helpful in detecting problems specific to the classroom, including awareness of

hygiene and behavior regulation.■ Meeting participants recommended including at least some key items from school

function assessments in studies of outcomes of TBI in children and youth.

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Recommendations for Additional Research into TBI in Children and Youth

O bjectiveThis section summarizes participant recommendations regarding the wide-ranging needs for additional research and improved research methods in studies of TBI in children and youth.

The N eed for Q ualitative ResearchQualitative research facilitates an increased understanding of the experiences of people with TBI, their caregivers, or professionals working with people with TBI from their own unique and personal perspectives. Such information can guide the development of informational materials and questionnaires for epidemiologic studies. Common qualitative research techniques include focus groups and individual interviews. (See Patton MQ. Qualitative Evaluation and Research Methods (2nd Ed). Newbury Park, CA: Sage Publications, 1990.)

One meeting participant also had experience in conducting in-depth ethnographic, naturalistic studies with children with other health conditions (e.g., a study of children with asthma collected data by allowing them to carry video cameras). Participants recommended exploring the applicability of these methods to studies of TBI.

Research Topics

BasicBasic research addresses physiologic responses to brain injury. Meeting participants noted that further studies are needed to:

■ Reveal the underlying mechanisms of recovery■ Identify outcomes due to the injury itself vs. those that are secondary (e.g., neurogenic vs.

situational depression).

Patterns of RecoveryBecause recovery after TBI can be lengthy and because the risk of developing secondary conditions changes over time, better information about patterns of recovery from TBI is needed to understand the long-term effects of TBI. Meeting participants noted that further studies are needed to describe:

■ The natural history of recovery from TBI. For example, when are secondary conditions most likely to develop?

■ Recovery trajectories. That is, how quickly does recovery occur and in what order are skills regained?

■ The later emergence of TBI-related problems especially in children. For example, are infants with TBI more likely to have later learning disabilities, such as trouble with reading or math, or behavior problems that are associated with the TBI?

TBI in the U.S.: Assessing Outcomes in Children

15

TreatmentThe NIH Consensus Conference on the Rehabilitation of Persons with Traumatic Brain Injury documented the need for improved research on treatment of TBI, including treatment for children. Meeting participants noted the need for further studies about

■ The effectiveness of various treatments and the importance of the intensity level of those treatments

■ The effectiveness of educational and behavioral interventions■ The implementation of treatment guidelines - Specific issues include how widely the

guidelines are being applied and what effects implementation has on TBI outcomes.■ Personal (or person-centered) outcomes - Personal outcomes are the expectations that

people with disabilities have for their lives, including what they expect from the services and supports they receive. Many service providers have adopted personal outcomes as a measure of quality of their services. (The Council on Quality and Leadership in Supports for People with Disabilities, Towson, MD. 410-583-0060)

CostsFew studies have looked at the cost of TBI, especially among children. Cost data can help focus greater attention on a public health problem such as TBI. Meeting participants noted that further studies are needed to document:

■ The costs of TBI in children, including reduced quality of life, compared with costs for other child health conditions (e.g., asthma, HIV)

■ The economic impact of TBI on children, their families, and society.

Issues of M easurement and Data AnalysisAmong the greatest challenges to conducting high-quality research on outcomes of TBI in children are limitations in existing outcome measures and analytic approaches as well as the lack of standard terminology to describe the outcomes. Meeting participants offered the following recommendations to improve measurement, analysis, and terminology:

■ Conduct studies to assess the validity of existing measures for use in follow-up studies (i.e., sensitivity to individual changes over time) and apply improved methods for testing item validity.

■ Use new types of measures including cognitive measures for use by school psychologists and applicable to consumers; a global measure of cognitive function that assesses memory; a cognitive screening tool for surveillance; a TBI-specific outcomes measure;1 a severity measure for comparing the burden of TBI with that of other conditions; and improved measures of the environment and its relationship to disability.

■ Develop a standard terminology to describe and document service needs and barriers.■ Develop new analytic approaches including application of growth curve analysis to

detailed studies of the relationship between development and recovery from TBI.

1 To expedite development of this measure, it would be preferable to apply enhancements to existing measure(s) to address the limitations of those measures (e.g., add to an existing measure an appropriate assessment of cognitive functioning) as opposed to developing an entirely new measure.

TBI in the U.S.: Assessing Outcomes in Children

16

0ther Methodologic Issues in Assessing TBI Outcomes in Children

O bjectiveThe objective for this section is to review key issues to consider in conducting studies of TBI outcomes in children and youth.

Meeting participants had a wide range of experiences in obtaining information from children with TBI, their families and schools. These sections document participants’ ideas about the challenges of designing and implementing a study of outcomes of TBI in children and youth and how they should be managed.

C onsiderations for D efining th e Study Population

Degree to which the Study Population Represents the General PopulationMeeting participants discussed how representative the study population would be if children were selected for follow-up using the same approach used in CDC follow-up studies of older adolescents and adults. That approach, which identifies cases from surveillance systems using hospital discharge data sets, has some important limitations:

■ It may underestimate problem outcomes because those who can still be identified and followed after one-year post-hospital discharge tend to have more resources and more stable lives (for adults followed in the Colorado follow-up system, about 35% are lost to follow-up within one year).

■ It probably does not include an adequate subsample of children from low-income families.

■ It does not include children seen in the emergency department (ED) but not admitted to hospital. The majority of children with TBI are seen only in the ED.

Sampling FrameParticipants discussed an appropriate sampling frame for selecting cases for follow-up studies of children. They determined that the sampling frame should include both children treated and released from the ED and children discharged from the hospital. The population should then be stratified by severity before selecting the sample.

Information from Parents / Caregivers and SchoolsParticipants also discussed whether the study should collect information from parents / caregivers or schools:Parent / caregiver:

■ A study should include assessments of both the parent (caregiver) and older children (age 8 to 10 or older). Parents and children may differ in reporting, especially about the social experiences of the child, with the parent reporting that the child has more friends and fewer problems with peer interactions than the child reports.

TBI in the U.S.: Assessing Outcomes in Children

17

School:■ A study should incorporate school assessments o f the child’s abilities, if possible.■ Parents’ and teachers’ understanding of the child’s individual educational plan (IEP) may

differ, so getting both perspectives is important.■ Parents tend to rate their child's school performance higher than do school personnel.

The more time that has elapsed since the injury, the higher parents tend to rate pre-injury performance (including school performance).

■ Interviews of teachers could yield some valuable information, especially for younger children who have one teacher only.

■ Information from school records may also be useful; however, school records may not be complete, and schools are inconsistent in classifying children’s disability. For example, a child with a brain injury may be classified as having a learning disability, not a TBI.School records may not be a thorough source of information about grade retention and services received, but these areas are important, so a study should obtain information about them using other methods if necessary.

■ Other school-related information of interest includes drop-out rates, achievement on statewide standardized tests and transfers to alternative schools.

■ Whether obtaining information requires IRB approval from each school might vary by location, so researchers should check before beginning the study.

A ppropriateness o f T elep h on e Interviews for Children / Youth Follow -up StudiesInstead of using in-person interviewing, which is very expensive, CDC has used telephone interviewing to collect information in its follow-up studies of older adolescents and adults. Meeting participants discussed the appropriateness of this approach for studies among children and youth.

General IssuesBefore beginning telephone interviewing, researchers should investigate telephone coverage among the proposed study population because low-income families may not have telephones. Researchers might also consider newer alternatives such as Internet administration, but Internet coverage among low-income families is likely to be even lower than for telephones.

Telephone vs. In-PersonStudies show that responses vary according to mode of administration (telephone vs. in-person and, for in-person interviews, whether the interview is conducted by a doctor/nurse or other type of interviewer). People tend to report fewer impairments when they are interviewed in-person than when they are interviewed by telephone. Therefore, researchers might need to compare responses from in-person and phone interviews in a sample of participants to evaluate reliability.

Interviewing Children by TelephoneStudies suggest that interviewing by telephone may not be appropriate for children and youth younger than age 13. TBI-related deficits and problems such as fatigue and limited attention span may make phone interviews with young people more difficult.

TBI in the U.S.: Assessing Outcomes in Children

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Suggestions for Enhancing Telephone Administration■ Pilot the questionnaire and revise based on results and experience before beginning the

main study.■ Consider mailing the parent questionnaire before the interview to give them time to think

about their answers.

A ppropriate Interview Length■ Questionnaires for use with children and youth with TBI should be as short as possible to

minimize fatigue among participants. Questionnaires for use with their parents may be longer but should also be kept as short as possible.

■ Interviews should not exceed 45 minutes for adolescents while approximately 60 minutes is appropriate for parents. Meeting participants suggested that questionnaires for use with children should be pilot tested to determine the appropriate interview length.

■ Meeting participants also suggested pilot testing a longer version for use with adolescents or parents to see how they respond. Families of children with TBI may be very invested in outcomes and often like to have someone to talk with. Some meeting participants reported surprise at the willingness of parents to be interviewed for longer than 60 minutes.

Effective Follow -up InterviewsLongitudinal studies of TBI outcomes involve an initial interview sometime after TBI, then tracking participants and re'interviewing them periodically, often at one-year intervals. Of particular concern is the potential for loss to follow-up because the families move or no longer agree to be part of the study. Meeting participants offered these suggestions for follow-up with children who have TBI:

Timing of Follow-Up■ Begin interviewing earlier than one year after the injury (optimally at 3-6 months). This

approach could help decrease loss to follow-up because the family is less likely to have moved from the address found in the medical record. This approach would also provide useful information about patterns of early recovery.

■ Consider beginning active surveillance and follow-up while people are still in the hospital. Follow-up beginning at one year is not timely enough to meet the needs of people with TBI to be identified early and linked to information that can help them get the services they need. Meeting these needs requires a case management approach, even if it is cost- and resource-intensive. The principal investigator for the South Carolina follow-up study of older adolescents and adults estimates that double the funding it currently receives from CDC would be required to initiate active surveillance of TBI. To decrease the cost and improve the feasibility of conducting more active surveillance, researchers should consider limiting surveillance to the few hospitals that see the majority of child TBI cases— for example, Level I trauma centers and children’s hospitals.

■ Consider alternative approaches to tracking, especially for very young children, such as early intervention tracking systems that follow very young children (younger than age 3) who have TBI or other disability (e.g., in Rhode Island).

TBI in the U.S.: Assessing Outcomes in Children

19

Length of Follow-UpA single year of follow-up is insufficient to document important outcomes. Ideally, a study should follow children as long as possible through as many developmental transitions as possible to try identifying late-emerging problems resulting from TBI. Based on experience with the currently funded CDC studies of outcomes in older adolescents and adults, three- to five-year follow-up is feasible considering estimated cost and loss to follow-up.

TrackingTo reduce loss to follow-up, researchers should test a mechanism for routinely contacting participant families, such as sending a postcard at frequent intervals to track changes of address.

A dvan tages o f and Selected M ethods for C om parison GroupsMeeting participants strongly recommended including a comparison group as part of any follow- up study of outcomes of TBI in children to strengthen the study design and improve the usefulness of the findings. A comparison group completes the same questionnaire as the follow- up study participants, and researchers compare their responses with those of the children with TBI. The comparison group need not be the same size as the group of children with TBI. Methods of selecting a comparison group vary. Meeting participants discussed the pros and cons of each method, as summarized below:

N on-TB I Trauma Comparison GroupThis approach entails selecting a population of children who were injured but did not have a TBI, matched by age and sex with the TBI children. The approach helps control for risk factors for injury that are similar between the two groups. The comparison group should be matched by socio-economic status to the TBI group.

■ Researchers should consider the length of time following the trauma in selecting the comparison group. If the concern is adjusting for pre-injury risk factors only, selecting children who have recovered from the trauma may be more appropriate.

■ Keeping non-TBI trauma controls involved in the study requires much effort, especially if they will be interviewed more than once, because they are not as invested in it as family members.

■ Meeting participants strongly recommended this approach.

Friend Comparison GroupThis approach involves selecting one similar-aged friend for each child with a TBI. The “friend control” completes the questionnaire. The approach helps control for social environment and school context, but friend controls might not have the same pre-injury risk factors.

■ Defining "friend" may be difficult for very young children. Also, many children lose their friends after the TBI, so identifying a friend control may be difficult.

■ Keeping friends involved in the study requires effort because they are not as invested in it as family members.

■ Meeting participants recommended this approach as useful but with several limitations.

TBI in the U.S.: Assessing Outcomes in Children

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Sibling Comparison GroupThis approach involves selecting a brother or sister of the child with TBI to serve in the comparison group. The approach helps control for family environment factors, but matching on age and sex may be impossible or there may not be any siblings.

■ Siblings may not be a good comparison group because, as part of the family of the child with TBI, they also feel effects of the trauma.

■ Meeting participants did not recommend this approach.

Age- and Sex-Matched Comparison groupThis approach involves selecting a sample of children from the general population, matched by age and sex. The approach allows comparison of the normal developmental trajectory with the trajectory for children with TBI.

■ Meeting participants recommended this approach. They also suggested that the optimal study would include both an age- and sex-matched comparison group and a non-TBI trauma comparison group.

TBI in the U.S.: Assessing Outcomes in Children

21

0ther TBI Issues

Research on outcomes of TBI is only one component of a broader effort to improve the lives of children with TBI. Meeting participants also noted the need for improved education and awareness of TBI as a public health problem and the need for more CDC research. To address those needs, participants offered the following suggestions:

Education and A w aren essIn the TBI A ct Reauthorization of 2000, CDC has been given expanded authorization for an education and awareness campaign. The campaign should consider:

Increasing overall public awareness■ A recent Harris poll, commissioned by the Brain Injury Association, revealed that the

American public greatly underestimates the magnitude and importance of TBI (www.biausa.org/harrispollresults.htm. Accessed January 24, 2001).

■ All educational efforts should strive to use standard terminology to increase understanding and improve communication about TBI.

Raising awareness in the medical and TBI communities■ The campaign should educate the medical and TBI communities that so-called “mild”

TBI can result in serious, long-term deficits. A relatively large number of children have problems after mild TBI.

■ A group of neuropsychologists, now at the University of Pittsburgh, has developed a computer-based sports sideline screening for symptoms of concussion. The National Football League (NFL) first used the screening, and now some college and high school sports use it, which has generated a lot of attention from parents.

Increasing the awareness of parents and caregivers■ Parents and caregivers also need to better understand what they can expect after a

child has a TBI, especially a less severe TBI.■ Cultural sensitivity is critical.

° Efforts to develop materials that increase awareness should begin withfocus groups to understand children's and families' perspectives and the language that is meaningful to them.

° Educational efforts should be sensitive to the different information needsof parents of children whose disability resulted from a sudden change (i.e., TBI) and of parents of children with developmental disability. An education campaign should try to ensure that the information about possible outcomes of TBI in children does not result in negative self- fulfilling prophecies. For example, children with mild-to-moderate TBI may have cognitive deficits, but they are still capable of learning.

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22

D is s e m in a t io nC D C should d is tribu te educationa l m ateria ls as w ide ly as possible, in c lu d in g th rough the H RS A M a te rn a l and C h ild H e a lth Bureau Clearinghouse, w h ich d istributes a w ide range o f m ateria ls on c h ild re n ’s hea lth .

C D C R e se a rch E ffo rtsM e e ting partic ipan ts offered the fo llow ing add itiona l suggestions fo r steps the C D C should take to im prove know ledge about T B I outcomes in ch ild ren .

■ C o n tin u e to c o lle c t d a ta w h ile e n s u rin g m o re w id e s p re a d d is s e m in a tio n .C D C should con tinue to increase awareness o f the T B I prob lem by co llec ting and sharing data about the inc idence and prevalence o f T B I and T B I-re la te d d isability . In fo rm a tio n should be in a fo rm th a t can be d is tribu ted by hea lth professionals to people w ith T B I and th e ir fam ilies. For example, C D C should pub lish more brochures like the concussion brochure (Facts about Concussion and Brain In ju ry , w w w .cdc .gov /nc ip c /tb i. Accessed January 24, 2001).

■ S u p p o r t , p ro m o te a n d c o n d u c t a d d it io n a l re s e a rc h .C D C should make its surveillance data sets m ore w ide ly and read ily available to o the r researchers and professionals, in c lu d in g v ia the In te rne t.

C D C needs to id e n tify research gaps and issue requests fo r proposals (RFPs) to address those gaps. Fu tu re C D C studies should docum ent:

° the d isproportiona te ly low fund ing fo r T B I com pared w ith the burden o fT B I

° poor coverage o f services by insurance companies° the percentage o f ch ild re n w ith T B I rece iv ing services and the percentage

n o t rece iv ing them° the need fo r appropria te educationa l program m ing fo r ch ild re n and yo u th

w ith T B I.

TBI in the U.S.: Assessing Outcomes in Children

Ameratunga, Gotsch

A ppendix AOverview of Outcome Assessments Available for Use with Children and Youth with TBIQ u a lity o f LifeTitle Purpose Age

Range(yrs)

Parent orchildresponse

Administrationmode

Number o f items

Time(min)

Reliabilitystudies?

Validitystudies?

Used in child / youth TBI studies?

Ref. Strengths Weaknesses

CHIP (Child Health & Illness Profile)

Assess physical & mental health

11-17Child / youth

Self­administered

153 30-45 Yes Yes 12,15, 22

Can be used to assess change over time

Utilization questions within the health status scale; requires professional interpretation

CHQ(ChildHealthQuestion­naire)

Assess physical, emotional & social well­being

5-17

10/12 & older

5 &younger

Parent

Child

Parent

Self­administered

28 or 50

87

87

Yes Yes Yes6,J.Landgraf

Specifically developed for children/youth; well normed; used in other pediatric populations; allows parallel child & parent reports; telephone interview scripted

Limited data on sensitivity to change; under 5 version not yet normed; may not be as sensitive as condition-specific instrument; paper-&- pencil version normed but telephone interview not normed

COOPCharts(DartmouthPrimaryCareCooperative Info. Project)

Assess functioning and health- related quality of life

8-12

13-18

Child

Youth

Self­administered

9

14

Yes Yes 12

F loo r and ce iling e ffects; relies on sam p le size fo r pow er

PedsQL (Pediatric Quality of LifeInventory)

Assess health- related quality of life

8-18

C hild /youth

Parent

Child: interview

Youth & parent: self­administered

15 core, 30 disease- specific

Yes Yes 25

QWB(Quality of Well-Being)

Assess quality of life

12 and older

YouthStructuredinterview 15 For adults Yes 3, 8

Weighted based on population preferences; adapted from adult measure; low parent/ youth correlation; not designed for a neurological population

toW

— Information was not found. * Measure was discussed during the meeting. ** General topic was discussed during the meeting.

Ameratunga, Gotsch

E p id e m io lo g yTitle Purpose Age

Range(yrs)

Parent o r child response

Administrationmode

Number o f items

Time(min)

Reliabilitystudies?

Validitystudies?

Used in child / youth TBI studies?

Ref. Strengths Weaknesses

NHIS(NationalHealthInterviewSurvey)

Assessprevalenceof certainhealth-relatedconditionsin the US

1988 Child Supp:0-181994DisabilitySupp:0-18

Parent

Parent

StructuredtelephoneinterviewStructuredtelephoneinterview

65 yes

12, 21

OCHS(Ontario Child Health Survey)

Assess prevalence of emotional & behavioral disorders

4-16

12-16

Parent

Youth

Interview & self­administered

304

169Yes Yes 12

B e h a v io r a l / C o g n itiv eTitle Purpose Age

Range

(yrs)

Parent orchildresponse

Adm inistrationmode

Number of items

Time(min)

Reliabilitystudies?

Validitystudies?

Used in child / youth TBI studies?

Ref. Strengths Weaknesses

*BASC(Behavior Assessment System for Children)

Measureanxiety,depression,aggression,coping,socialrelationships

2.5-18

8-18

Parent/teacher

C hild /youth

Self­administered

Self­administered

130

152 child 186 youth

10-20

30-45

Yes Yes 14Normed; relatively brief

‘ BRIEF(Behavior Rating Inventory of Executive Function)

Assess executive functioning including self­monitoring, organization­al control, & individual planning

5-18

2.5-5

11-22

Parent & teacher

Parent

Youth

Self­administered

Self­administered

Self­administered

8610 Yes Yes Yes 10

5-18 year parent version normed; more specific than some other measures

2.5-5 year parent and 11 -22 year youth versions still being normed; rather long

*CBCL(ChildBehaviorChecklist)

Assesschildren'scompetencies& behavioral/emotionalproblems

1.5-5

4-18

Parent

Parent

Self-administered

Self­administered

99

118

Yes Yes Yes 1, 20

Designed to assess psychopathology; may not be appropriate fo r brain injured population; quite long; can give inconsistent results K34*

— Information was not found. Measure was discussed during the meeting. General topic was discussed during the meeting.

Ameratunga, Gotsch

B e h a v io ra / C o g n it iv e c o n t in u e d

*FS-II(R)(Functional Status ll(R))

Assess behavioral response to illness that interferes with normal social roles

0-16 ParentStructuredinterview

long: 43 short: 14

Yes Yes 12,1 5 ,23

Can be used repeatedly to document change

Designed for lower end of the functional continuum; permission must be obtained from authors

F u n ction a lTitle Purpose Age

Range(yrs)

Parent orchildresponse

Adm inistrationmode

Number o f items

Time(min)

Reliabilitystudies?

Valid itystudies?

Used in child / youth TBI studies?

Ref. Strengths Weaknesses

*PEDI(Pediatric Evaluation of Disability Inventory)

Measure capability & performance of functional activities

0.5-7.5Parentsand/orphysicians

Interview or directobservation

41 45 Yes Yes Yes 2 ,9 S. Haley

Incorporates more cognitive,behavioral, & safety components than WeeFIM

Primarily a rehab instrument; limited age range

*PEDI II(Pediatric Evaluation of Disability Inventory, Version II)

MeasureADLs,social/behavioralactivities &communityparticipation

0-18

ClinicalstaffParent

Self­administered 44 45 Planned Planned

Designed for TBI

S. Haley

Focuses more on community participation than PEDI; some questions may be useful fo r TBI surveillance

Still in development; questionable inter- rater reliability; too detailed for surveillance; focuses on rehab, more severe injuries, people who receive services

*SIB(Scales ofIndependentBehavior)

Assess adaptive & maladaptive behavior

0 -80+ ParentStructured interview or checklist

long: 259 short: 40

45-6015-20

Yes Yes 11,18, 19

Global index of independence; considers initiation of activity

*VABS(VinelandAdaptiveBehaviorScales)

Survey activities the child/youth habitually demonstrates in theenvironment

0-18 ParentSemi­structuredinterview

297 30-60 Yes Yes Yes 11, 16Short form has global index of independence

C o m p lica te d in te rv iew process

*WeeFIM(Functional Independenc e Measure for Children)

Assess functional independence by focusing ondependence

0.5-7 ParentInterview or directobservation

18 15-20 Yes Yes Yes9, 15, 24

Can be used repeatedly to document change

Difficult to teach to interviewers with no rehab experience; designed for inpt assessment of kids with serious injury; ceiling effect; underrepresents cognitive defects

— Information was not found. * Measure was discussed during the meeting. ** General topic was discussed during the meeting.

Ameratunga, Gotsch

E d u c a t i o n a l / V o c a t i o n a l / R e c r e a t i o n

Title Purpose AgeRange(yrs)

Parent orchildresponse

Administrationmode

Number o f items

Time(min)

Reliabilitystudies?

Validitystudies?

Used in child / youth TBI studies?

Ref. Strengths Weaknesses

*PPSC(PlayPerformance Scale for Children)

Assess play performance 0.5-16 Parent or

clinicianSelf­administered

Singlescale

2 Yes Yes 13, 15

Assessment can be done by non­professionals; easy to administer, analyze & interpret

Used primarily in oncology studies

*PSO(Post-SecondaryOutcomes)

Assess educational & vocational status

post-highschool

Youth & parent

Structuredinterview

Designed for TBI

BonnieTodis

*SFA(SchoolFunctionAssessment)

Assess ability to perform functional tasksnecessary for the academic & social aspects of education

K-6thgrade

Interview / evaluation

Yes 7 May have useful elements Long

F am ily F u n ctio n in gTitle Purpose Age

Range(yrs)

Parent orchildresponse

Administrationmode

Number o f items

Time(min)

Reliabilitystudies?

Validitystudies?

Used in child / youth TBI studies?

Ref. Strengths Weaknesses

*FAD(McMasterFamilyAssessmentDevice)

Assessglobalfamilyfunctioning

naParents /familymembers

Self­administered

53 15-20 Yes Yes Yes 9, 27Not designed to measure impact on family; not sensitive to change over time

*FBII (Family Burden of Injury Interview)

Assess burden of pediatric TBI on families

na Parent Interview 27 Yes Yes Yes 4,27 Sensitive to change over time

May not be applicable to non-TBI groups; rather long

*IOF-G(Impact on the Family Scale, Version G)

Measure impact of pediatric disability on family

na Parent Interview 34 Yes Yes 15, 27Brief, useful- designed to be more sensitive to change

D ifficu lt to ge t; m ay no t be as useful as FBII

IOo>

— Information was not found. * Measure was discussed during the meeting. ** General topic was discussed during the meeting.

Ameratunga, Gotsch

** D e p r e s s i o n

Title Purpose AgeRange(yrs)

Parent o rchildresponse

Adm inistrationmode

Number o f items

Time(min)

Reliabilitystudies?

Validitystudies?

Used in child / youth TBI studies?

Ref. Strengths Weaknesses

BDI(BeckDepressionInventory)

Evaluatedepressivesymptoms

Youth YouthSelf­administered

21 5-10 Yes Yes 17, 20Measuring depression may not be as important in children/ youth as in adults

CDI(ChildDepressionInventory)

Assess frequency of depressive symptoms

8-17Child / youth

Self­administered

27 Yes 26Measuring depression may not be as important in children/ youth as in adults

CES-D(Center for Epidemiologi cal Studies Depression Scale)

Measurecurrentdepressivesymptoms

Youth YouthSelf­administered

20 Yes Yes 9Measuring depression may not be as important in ch ildren/ youth as in adults

**PTSDTitle Purpose Age

Range(yrs)

Parent orchildresponse

Adm inistrationmode

Number o f items

Time(min)

Reliabilitystudies?

Validitystudies?

Used in child 1 youth TBI studies?

Ref. Strengths Weaknesses

CAPS-CA(ClinicianAdministeredPTSD Scale,Child/Adolescentversion)

MeasurePTSD-relatedsymptoms

7-18C h ild /youth

Structuredinterview 33

30-120

Yes 5

Can assess impact of symptoms on functioning; extremely detailed and thorough

Requires a longer time period than other assessments; requires administration by a trained professional

CPTS-RI(ChildPosttraumaticStressReactionIndex)

MeasurePTSD-relatedsymptoms

6-17C h ild /youthParent

Semi-structuredinterview

20 20-45 Yes Yes Yes 5, 28Relatively brief and easy to administer

Does not inquire about all DSM-IV symptoms; parent version not yet validated

TESI(TraumaticEventsScreeningInventory)

Assesstraumahistory

4-18

C hild /youth

Parent

Semi-structuredinterview

Interview or self­administered

15

19

10-30

10-30

Yes Yes Yes 5Requiresa d m in is tra tio n by a tra in e d p ro fess iona l

K>

— Information was not found. * Measure was discussed during the meeting. ** General topic was discussed during the meeting.

28

References for Appendix A

1 . A c h e n b a c h S y s t e m o f E m p i r i c a l l y B a s e d A s s e s s m e n t W e b S i t e . A v a i l a b l e a t :

w w w . u v m . e d u / ~ c b c l . A c c e s s e d O c t o b e r 1 9 , 2 0 0 0 .

2 . B o s t o n U n i v e r s i t y C e n t e r f o r R e h a b i l i t a t i o n E f f e c t iv e n e s s P E D I p a g e . A v a i l a b l e

a t : w w w . b u . e d u / c r e / p e d i . A c c e s s e d O c t o b e r 1 9 , 2 0 0 0 .

3 . B r a d l y n A S , H a r r i s C V , W a r n e r J E , R i t c h e y A K , Z a b o y K . A n i n v e s t i g a t i o n o f

t h e v a l i d i t y o f t h e Q u a l i t y o f W e l l - B e i n g S c a le w i t h p e d i a t r i c o n c o l o g y p a t i e n t s .

H e a l t h P s y c h o lo g y . 1 9 9 3 ; 1 2 : 2 4 6 - 2 5 0 .

4 . B u r g e s s E S . D r o t a r D , T a y l o r H G , W a d e S , S t a n c in T , Y e a t e s K O . T h e F a m i l y

B u r d e n o f I n j u r y I n t e r v i e w : R e l i a b i l i t y a n d v a l i d i t y s t u d ie s . J o u r n a l o f H e a d

T r a u m a R e h a b i l i t a t i o n . 1 9 9 9 ; 1 4 : 3 9 4 - 4 0 5 .

5 . C a r l s o n E B . T r a u m a a s s e s s m e n t s : A c l i n i c i a n 's g u i d e . N e w Y o r k : T h e

G u i l f o r d P r e s s ; 1 9 9 7 .

6 . C h i l d H e a l t h Q u e s t i o n n a i r e . A v a i l b l e a t : w w w . c h q m a n u a l . c o m . A c c e s s e d

O c t o b e r 1 9 , 2 0 0 0 .

7 . C o s t e r W , D e e n e y T , H a l t i w a n g e r J , H a le y S . T e c h n i c a l R e p o r t f o r t h e S c h o o l

F u n c t i o n A s s e s s m e n t . A v a i l a b l e a t :

w w w . p s y c h c o r p . c o m / c a t g / r e s o u r c e / t e c h r p t s / s f a l . h t m l . A c c e s s e d N o v e m b e r

6, 2 0 0 0 .

8 . C z y z e w s k i D l , M a r i o t t o M J , B a r t h o l o m e w L K , L e C o m p t e S H , S o c k r i d e r M M .

M e a s u r e m e n t o f q u a l i t y o f w e l l - b e i n g in a c h i l d a n d a d o l e s c e n t c y s t ic f i b r o s i s

p o p u l a t i o n . M e d i c a l C a r e . 1 9 9 4 ; 3 2 : 9 6 5 - 9 7 2 .

9 . D i t t m a r S S , G r e s h a m G E . F u n c t i o n a l a s s e s s m e n t a n d o u t c o m e m e a s u r e s f o r

t h e r e h a b i l i t a t i o n h e a l t h p r o f e s s i o n a l . G a i t h e r s b u r g , M D : A s p e n P u b l i s h e r s ,

I n c . ; 1 9 9 7 .

1 0 . G i o i a G . P e r s o n a l c o m m u n i c a t i o n , N o v e m b e r 1 , 2 0 0 0 .

1 1 . H i l l B . A d a p t i v e a n d m a l a d a p t i v e b e h a v i o r s c a le s . A v a i l a b l e a t :

w w w . i s d . n e t / b h i l l / c o m p a r e . h t m . A c c e s s e d N o v e m b e r 3 , 2 0 0 0 .

1 2 . L a n d g r a f J M . A b e t z L N . M e a s u r i n g h e a l t h o u t c o m e s in p e d i a t r i c p o p u l a t i o n s :

I s s u e s in p s y c h o m e t r i c s a n d a p p l i c a t i o n . I n : S p i l k e r B , e d i t o r . Q u a l i t y o f l i f e

29

a n d p h a r m a c o e c o n o m i c s in c l i n i c a l t r i a l s . 2 n d e d . P h i l a d e l p h i a : L i p p i n c o t t -

R a v e n P u b l i s h e r s ; 1 9 9 6 . p . 7 9 3 - 8 0 0 .

1 3 . L a n s k y L L , L is t M A , L a n s k y S B , C o h e n M E , S in k s L F . T o w a r d t h e d e v e l o p m e n t

o f a P la y P e r f o r m a n c e S c a le f o r C h i l d r e n (P P S C ) . C a n c e r . 1 9 8 5 ; 5 6 : 1 8 3 7 -

1 8 4 0 .

1 4 . K a m p h a u s R W , P e t o s k e y M D , C o d y A H , R o w e E W , H u b e r t y C J . A t y p o l o g y o f

p a r e n t r a t e d c h i l d b e h a v i o r f o r a n a t i o n a l U .S . s a m p l e . J o u r n a l o f C h i l d

P s y c h o lo g y a n d P s y c h ia t r y . 1 9 9 9 ; 4 0 : 6 0 7 - 6 1 6 .

1 5 . K o z in e t z C A , W a r r e n R W , B e r s e t h C A , A d a y L A , S a c h d e v a R , K i r k l a n d R T .

H e a l t h s t a t u s o f c h i l d r e n w i t h s p e c ia l h e a l t h c a r e n e e d s : M e a s u r e m e n t is s u e s

a n d i n s t r u m e n t s . C l i n i c a l P e d ia t r i c s . 1 9 9 9 ; 3 8 : 5 2 5 - 5 3 3 .

1 6 . M a x J E , K o e le S L , L i n d g r e n S D , R o b in D A , S m i t h W L , S a t o Y , A r n d t S .

A d a p t i v e f u n c t i o n i n g f o l l o w i n g t r a u m a t i c b r a i n i n j u r y a n d o r t h o p e d i c i n j u r y : A

c o n t r o l l e d s t u d y . A r c h i v e s o f P h y s ic a l M e d i c i n e a n d R e h a b i l i t a t i o n .

1 9 9 8 ; 7 9 : 8 9 3 - 8 9 9 .

1 7 . M c D o w w e l l I , N e w e l l C . M e a s u r i n g h e a l t h : A g u i d e t o r a t i n g s c a le s a n d

q u e s t i o n n a i r e s . 2 n d e d . N e w Y o r k : O x f o r d U n iv e r s i t y P r e s s ; 1 9 9 6 .

1 8 . M i d d l e t o n H A , K e e n e R G , B r o w n G W . C o n v e r g e n t a n d d i s c r i m i n a n t v a l i d i t i e s

o f t h e S c a le s o f I n d e p e n d e n t B e h a v io r a n d t h e R e v is e d V i n e l a n d A d a p t i v e

B e h a v i o r S c a le s . A m e r i c a n J o u r n a l o n M e n t a l R e t a r d a t i o n . 1 9 9 0 ; 9 4 : 6 6 9 -

6 7 3 .

1 9 . S c a le s o f I n d e p e n d e n t B e h a v io r - R e v is e d . A v a i l a b l e a t :

w w w . r i v e r p u b . c o m / p r o d u c t s / c l i n i c a l / s i b r _ i n d e p t h . h t m . A c c e s s e d N o v e m b e r

3 , 2 0 0 0 .

2 0 . S p r e e n O , S t r a u s s E . A c o m p e n d i u m o f n e u r o p y s c h o l o g i c a l t e s t s :

A d m i n i s t r a t i o n , n o r m s , a n d c o m m e n t a r y . 2 n d e d . N e w Y o r k : O x f o r d

U n i v e r s i t y P r e s s ; 1 9 9 8 .

2 1 . S t a n c in T , T a y l o r H G , T h o m p s o n G H , W a d e S , D r o t a r D , Y e a t e s K O . A c u t e

p s y c h o s o c i a l i m p a c t o f p e d i a t r i c o r t h o p e d i c t r a u m a w i t h a n d w i t h o u t

a c c o m p l a n y i n g b r a i n i n j u r i e s . J o u r n a l o f T r a u m a . 1 9 9 8 ; 4 5 : 1 0 3 1 - 1 0 3 8 .

2 2 . S t a r f i e l d B , E n s m i n g e r M , R i le y A , R y a n S , G r e e n B , M c H a u h e y P , S k i n n e r A ,

K im S . A d o l e s c e n t h e a l t h s t a t u s m e a s u r e m e n t : D e v e l o p m e n t o f t h e C h i l d

H e a l t h a n d I l ln e s s P r o f i l e . P e d ia t r i c s . 1 9 9 3 ; 9 1 : 4 3 0 - 4 3 5 .

30

2 3 . S t e in R E , J e s s o p D J . F u n c t i o n a l S t a t u s l l ( R ) : A m e a s u r e o f c h i l d h e a l t h s t a t u s ,

[ p u b l i s h e d e r r a t u m a p p e a r s in M e d i c a l C a r e 1 9 9 1 ; 2 9 : 4 8 9 ] . M e d i c a l C a r e .

1 9 9 0 ; 2 8 : 1 0 4 1 - 1 0 5 5 .

2 4 . U n i f o r m D a t a S y s te m f o r M e d i c a l R e h a b i l i t a t i o n . A v a i l a b l e a t :

v A v w . u d s m r . o r g . A c c e s s e d O c t o b e r 1 9 , 2 0 0 0 .

2 5 . V a r n i J W , S e id M , R o d e C A . T h e P e d s Q L : M e a s u r e m e n t m o d e l f o r t h e

P e d ia t r i c Q u a l i t y o f L i f e I n v e n t o r y . M e d i c a l C a r e . 1 9 9 9 ; 3 7 : 1 2 6 - 1 3 9 .

2 6 . V i l a G , N o l l e t - C l e m e c o n C , V e r a M , R o b e r t J J , d e B l i c J , J o u v e n t R . P r e v a le n c e

o f D S M - I V d i s o r d e r s in c h i l d r e n a n d a d o le s c e n t s w i t h a s t h m a v e r s u s d ia b e t e s .

C a n a d i a n J o u r n a l o f P s y c h ia t r y . 1 9 9 9 ; 4 4 : 5 6 2 - 5 6 9 .

2 7 . W a d e S L , T a y l o r H G , D r o t a r D , S t a n c in T , Y e a t e s K O . F a m i l y b u r d e n a n d

a d a p t a t i o n d u r i n g t h e i n i t i a l y e a r a f t e r t r a u m a t i c b r a i n i n j u r y in c h i l d r e n .

P e d ia t r i c s . 1 9 9 8 ; 1 0 2 : 1 1 0 - 1 1 6 .

2 8 . W i l s o n J P , K e a n e T M , e d i t o r s . A s s e s s in g p s y c h o l o g i c a l t r a u m a a n d P T S D .

N e w Y o r k : T h e G u i l f o r d P r e s s ; 1 9 9 7 .

31

A p pend ix BTraumatic Brain Injury in Children and Youth as a Public Health Problem: An Overview

P re s e n te d b y D r. D a v id T h u rm a n , C D C

T h is s e c t i o n f e a t u r e s c o p ie s o f t h e s l id e s f r o m D r . D a v id T h u r m a n ' s p r e s e n t a t i o n . T h e

s u r v e i l l a n c e d a t a ( b e g i n n i n g w i t h S l i d e 2 ) a r e f r o m s e le c t e d s t a t e s f o r t h e i n f o r m a t i o n

a v a i l a b le a t t h e t im e o f t h e m e e t in g ; t h e r e f o r e , t h e d a t a s h o u ld b e c o n s id e r e d p r e l i m in a r y .

Slide 1 - E s tim a te d Im p a c t o f TBI o n C h ild re n A g e d 0 -1 4 Y e a rs in th e U n ite d S ta te s

■ 3 , 0 0 0 d e a t h s ( N C H S , 1 9 9 4 )

■ 2 9 , 0 0 0 h o s p i t a l i z a t i o n s

■ 4 0 0 , 0 0 0 E D v is i t s ( N H A M C S , 1 9 9 6 )

■ U n k n o w n n u m b e r w i t h l o n g - t e r m d i s a b i l i t y

Slide 2 - P re lim in a ry S urve illance F ind ings f o r TB I-R e la ted H o s p ita liz a tio n s & D e a th s -1997

T B I S u r v e i l l a n c e — B a c k g r o u n d

■ C D C c o l l e c t s d a t a o n T B I - r e l a t e d i n j u r i e s f r o m 1 5 s t a t e s .

■ Clinical case definition: I n j u r y t o t h e h e a d a s s o c ia t e d w i t h d e c r e a s e d c o n s c io u s n e s s ,

a m n e s i a , n e u r o l o g i c a b n o r m a l i t i e s , s k u l l f r a c t u r e , i n t r a c r a n i a l l e s io n o r d e a t h .

■ Data case definition: I C D - 9 c o d e s 8 0 0 - 8 0 1 , 8 0 3 - 8 0 4 , 8 5 0 - 8 5 4 a n d ( f o r f a t a l i t i e s

o n l y ) 8 7 3 .

■ Data sources: V i t a l r e c o r d s , h o s p i t a l d i s c h a r g e d a t a a n d m e d i c a l r e c o r d s ( f o r a

s a m p l e o f c a s e s ) .

■ Data elements: D e m o g r a p h i c , n a t u r e o f i n j u r y ( I C D - 9 N - c o d e s ) , c a u s e o f i n j u r y

( I C D - 9 E - c o d e s ) , s e v e r i t y , a n d o u t c o m e .

■ For this presentation, unless otherwise noted, data are from Minnesota, Missouri,

South Carolina and Utah

32

Slide 3 - Figure 1: Rates of TBI in Children and Youth by Age Group & Care Level, 1997

1 4 0

© 120

1 100 -I

8 0

6 0

o ©uoaM iA« 4 0«

20

0

0 -4 5 -9 1 0 -1 4 1 5 -1 9

A ge G roup

I P re-H osp D eath S H osp ita lized

A ll

T B I d e a t h a n d h o s p i t a l i z a t i o n r a t e s w e r e h ig h e s t a m o n g t h o s e a g e d 1 5 - 1 9 y e a r

Slide 4 - F ig u re 2 : TBI in C h ild re n a n d Y o u th : P e rce n t w ith F a ta l O u tc o m e s , 1 9 9 7

2 0 %

0 -4

7 .5 %

5 -9

9 .2 %

1 0 -1 4

A g e G r o u p

1 7 .1 %

1 5 -1 9

1 2 .3 %

T o ta l

% F a ta l

T h e p e r c e n t o f T B Is t h a t w e r e f a t a l i n c r e a s e d w i t h a g e .

33

Slide 5 - Figure 3: TBI Rates in Children and Youth by Age and Race, 1997

ooo«Soouoa«cst í

120

100

80

6 0

4 0

20

0

■ 0 -4

c otill

■

J -7

1 0 -1 4

m 1 5 -1 9

B la ck W h ite

R ace C a tegory

O th er

(Approximately 28% o f cases were o f unknown race)

F o r a l l c a t e g o r i e s o f r a c e , t h e h ig h e s t T B I r a t e s w e r e a m o n g y o u t h , a g e d

1 5 - 1 9 y e a r s f o l l o w e d b y c h i l d r e n a g e d 0 - 4 y e a r s .

T h e T B I r a t e in b l a c k c h i l d r e n a g e d 0 - 4 y e a r s w a s a p p r o x i m a t e l y t w i c e a s

h i g h a s f o r t h e s a m e - a g e d w h i t e o r o t h e r r a c e c h i l d r e n .

Slide 6 - F ig u re 4 : R ates o f TBI in C h ild re n a n d Y o u th b y A g e G ro u p a n d E x te rn a l C a u s e o f In ju ry , 1 9 9 7

ooooouofi­cea>ät í

8 0

7 0 -

6 0 -

5 0 -

4 0 -

3 0 -

20 -

10 -

I F a lls

□ T ran sp ort

I A ssa u lt

! F irearm s

A ge G roup

0-4 5-9 10-14 15-19

34

■ T h e r a t e o f T B I f r o m f a l l s d e c r e a s e d w i t h i n c r e a s i n g a g e .

■ T h e r a t e o f T B I f r o m t r a n s p o r t a t i o n i n c id e n t s w a s m o r e t h a n t h r e e t im e s a s

h i g h f o r y o u t h a g e d 1 5 - 1 9 y e a r s a s f o r c h i l d r e n in t h e y o u n g e r a g e g r o u p s .

■ T h e r a t e o f T B I f r o m f i r e a r m - r e l a t e d i n j u r i e s w a s h ig h e s t a m o n g 1 5 - 1 9

y e a r - o l d s .

■ T h e r a t e o f T B I f r o m n o n - f i r e a r m a s s a u l t s w a s h ig h e s t a m o n g 0 - 4 y e a r - o ld s .

Slide 7 - F ig u re 5 : TBI in C h ild re n A g e d 0 -4 Y e a rs : P ro p o r t io n b y C a u s e & R ace, 1 9 9 7

Black White

F o r c h i l d r e n a g e d 0 - 4 y e a r s , f a l l s w e r e t h e l e a d i n g c a u s e o f T B I , f o l l o w e d b y

t r a n s p o r t a t i o n a n d a s s a u l t s ; h o w e v e r , t r a n s p o r t a t i o n - r e l a t e d T B Is a c c o u n t e d f o r a

g r e a t e r p r o p o r t i o n a m o n g b l a c k c h i l d r e n t h a n a m o n g w h i t e s .

Slide 8 - F ig u re 6 : TBI in C h ild re n A g e d 5 - 1 4 Y e a rs : P ro p o r t io n b y C a u s e & R ace, 1 9 9 7

100% 90% 80% 70% - 60% - 50% - 40% - 30% - 20% - 10% - 0%

■ Firearms

■ Assault

■ Transport

■ Falls

Black White

T r a n s p o r t a t i o n in c i d e n t s w e r e t h e c a u s e o f a m a j o r i t y o f T B Is in 5 - 1 4 y e a r - o l d s .

35

Slide 9 - F ig u re 7 : TBI in Y o u th A g e d 1 5 -1 9 Y e a rs : P ro p o r t io n b y C a u s e a n d R ace, 1 9 9 7

100% 9 0 % J

8 0 %

7 0 % -

6 0 % .

5 0 %

4 0 %

3 0 % -

20% - 10% -

0%

B Firearm s

■ Assault

E3 Transport

H Falls

B lack W hite

T r a n s p o r t a t i o n w a s t h e l e a d i n g c a u s e o f T B Is , b u t c o m p a r e d t o t h o s e a g e d 5 - 1 4

y e a r s , a g r e a t e r p r o p o r t i o n w e r e d u e t o a s s a u l t s a n d f i r e a r m - r e l a t e d i n j u r i e s ,

p a r t i c u l a r l y a m o n g b la c k s .

36

A p pend ix CTBI in Children and Youth Data from the South Carolina Surveillance SystemP re s e n te d b y D r. A n b e s a w S e la s s ie , M e d ic a l U n iv e rs ity o f S o u th C a r o l in a

T h e f o l lo w in g a re c o p ie s o f th e le c tu re s lid e s f r o m D r. A n b e s a w S e la s s ie 's p re s e n ta t io n !

Slide 1 - T a b le 1 : D is t r ib u t io n o f TBI in C h ild re n T re a te d a n d R e le a se d f ro m E m e rg e n c y D e p a r tm e n ts — S o u th C a ro lin a , 1 9 9 6 -1 9 9 9

F e m a le M a l e A l l

A g e G r o u p (yrs) N u m b e r P e rc e n t (%) N u m b e r P e rc e n t (%) N u m b e r P e rcen t(% )

0-4 1 0 0 8 4 2 1 3 9 5 5 8 2 4 0 3 4 0

5-9 6 2 3 3 4 1 1 9 2 6 6 1 8 1 5 31

10-14 5 6 4 3 3 1 1 6 8 6 7 1 7 3 2 2 9

All 2 1 9 5 3 7 3 7 5 5 6 3 5 9 5 0 1 0 0

■ M a l e s 0 t o 4 y e a r s o f a g e h a d t h e g r e a t e s t n u m b e r o f T B I - r e l a t e d E D v is i t s .

■ A m o n g 0 t o 1 4 y e a r - o l d s , t h e t o t a l n u m b e r o f T B I E D v is i t s ( 5 , 9 5 0 ) w a s m o r e

t h a n 4 t im e s t h e n u m b e r o f T B I - r e l a t e d h o s p i t a l d i s c h a r g e s ( 1 , 4 5 1 — s e e T a b l e

2)-

37

Slide 2 - F ig u re 1 : A n n u a l R ate o f TBI in C h ild re n T re a te d a n d R e le a se d f ro m E m e rg e n c y D e p a r tm e n ts - S o u th C a ro lin a , 1 9 9 6 -1 9 9 9

S3<uu*0mm*•pnJS iJ©oo

rsoo5-Ciao-Mel

ÉÉÈ.H

0 -4 5 -9

A ge group

1 0 -1 4

■ F em ale I M a l e HA11

■ T h e a n n u a l r a t e o f T B I - r e l a t e d E D v is i t s w a s g r e a t e s t a m o n g c h i l d r e n a g e d 0 - 4

y e a r s ( 2 9 8 v is i t s p e r 1 0 0 70 0 0 ) .

■ T h e r a t e o f T B I - r e l a t e d E D v is i t s w a s s i m i l a r f o r c h i l d r e n a g e d 5 - 9 y e a r s a n d 1 0 - 1 4

y e a r s ( 2 3 2 a n d 2 2 8 p e r 1 0 0 , 0 0 0 , r e s p e c t iv e ly ) .

■ F o r a l l a g e g r o u p s , m a l e s h a d h i g h e r r a t e s o f T B I - r e l a t e d E D v is i t s , a n d t h e

d i f f e r e n c e i n c r e a s e d w i t h a g e .

38

S lid e 3 - T a b le 2 : D is t r ib u t io n o f TBI in C h ild re n D is c h a rg e d f ro m A c u te C a re F a c ilit ie s — S o u th C a ro l in a , 1 9 9 6 -1 9 9 9

F e m a l e M a l e A l l

A g e G r o u p (yrs) N u m b e r P e rc e n t (%) N u m b e r P e rc e n t (%) N u m b e r P e rc e n t(% )

0-4 2 3 0 41 3 3 6 5 9 5 6 6 3 9

5 -9 1 5 2 3 6 2 7 1 6 4 4 2 3 2 9

10-14 1 4 6 3 2 3 1 6 6 8 4 6 2 3 2

All 5 2 8 3 6 9 2 3 6 4 1 4 5 1 1 0 0

A s f o r E D v i s i t s , t h e g r e a t e s t n u m b e r o f T B I - r e l a t e d h o s p i t a l d i s c h a r g e s o c c u r r e d in m a l e s

a g e d 0 t o 4 y e a r s .

Rat

e pe

r 10

0,00

0 ch

ild

ren

39

S lid e 4 - F ig u re 2 : A n n u a l R ate o f TBI in C h ild re n D is c h a rg e d f ro m A c u te C a re F a c ilit ie s - S o u th C a ro l in a , 1 9 9 6 -1 9 9 9

9 0

8 0

7 0

6 0

5 0

4 0

3 0

2 0

10

0

0 -4 5 -9 1 0 -1 4

A g e g r o u p

■ F e m a le B M a le H A ll

■ T h e h i g h e s t r a t e o f h o s p i t a l i z a t i o n w a s f o r c h i l d r e n a g e d 0 - 4 y e a r s ( 7 0 p e r

1 0 0 , 0 0 0 ) , f o l l o w e d b y 1 0 t o l 4 y e a r - o l d s ( 6 1 p e r 1 0 0 , 0 0 0 ) , a n d 5 t o 9 y e a r - o l d s

( 5 5 p e r i 0 0 , 0 0 0 ) .

■ T h e r a t e o f h o s p i t a l i z a t i o n f o r m a l e s w a s g r e a t e r t h a n f o r f e m a l e s a t a l l a g e s .

4 0

Slide 5 - T a b le 3 : T yp e o f TBI in C h ild re n T re a te d a n d R e le a se d f r o m EDs - S o u th C a ro l in a , 1 9 9 6 -1 9 9 9

[C D -9-C M BASED TOPE OF BRAIN INJURY 0 - 4 5 - 9 10 -•14 A l l

N % N % N % N %

CLOSED CF.KEB CONTUSION 3 19 5 31 8 50 16 0

CLOSED fTRRTCR LAGERS UNSPEC HEM 62 51 30 25 30 25 122 2

CLOSED UNSPEC IC TB I 1631 47 1053 30 795 23 3479 58

CONCUSSION 436 24 605 33 774 43 1815 31

DURA-ARACH HEMDRRHAGE 40 43 23 24 31 33 94 2

FRACTURE SKULL, BASE 39 41 21 22 34 36 94 2

FRACTURE SKULL, VAULT 90 70 21 16 17 13 128 2

MULT SKULL&FACE FRACTURE 2 33 1 17 3 50 6 0

PENETRATING T B I 18 32 21 37 18 32 57 1

UNQUAL SKULL FRACTURE 62 59 35 25 22 16 139 2

A l l 2403 40 1815 31 1732 29 5950 100

■ C o n c u s s io n s w e r e t h e s e c o n d m o s t f r e q u e n t d i a g n o s i s f o r T B I - r e l a t e d E D v is i t s

a f t e r u n s p e c i f i e d c l o s e d h e a d in j u r i e s .

■ S k u l l f r a c t u r e s w e r e m o r e c o m m o n a m o n g c h i l d r e n a g e d 0 t o 4 y e a r s c o m p a r e d

t o o t h e r a g e g r o u p s .

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S lid e 6 - T a b le 4 : T y p e o f TBI in C h ild re n D is c h a rg e d f ro m A c u te C a re F a c ilit ie s - S o u th C a ro l in a , 1 9 9 6 -1 9 9 9

I CD- 9 -CM BASED TYPE OP BRAIN INJURY 0 - 4 5 - 9 10 -■14 A l l

N % N % N % N %

CLOSED CEREB CONTUSION 10 26 15 39 13 34 38 3

CLOSED CEREB IACER& UNSPEC HEM 56 29 60 31 76 40 192 13

CLOSED UNSPEC IC TB I 102 33 97 31 109 35 308 21

CONCUSSION 76 28 98 36 97 36 271 19

DURA-ARACH HEMORRHAGE 127 49 52 20 80 31 259 18

EARCTURE SKULL, EASE 59 41 43 30 43 30 145 10

FRACTURE SKULL, VAULT 96 77 16 13 13 10 125 9

PENETRATING T B I 19 25 34 45 23 30 76 5

UNQUAL SKULL ERACTORE 21 57 8 22 8 22 37 3

A l l 566 38 423 29 462 32 1451 100

■ I n t r a c r a n i a l h e m o r r h a g e s w e r e t h e t h i r d m o s t c o m m o n T B I - r e l a t e d d i s c h a r g e

d i a g n o s i s a f t e r u n s p e c i f i e d c lo s e d h e a d in j u r i e s a n d c o n c u s s io n s .

■ A l t h o u g h le s s c o m m o n t h a n f o r E D v is i t s , c o n c u s s io n s a c c o u n t e d f o r n e a r l y 1 in 5

T B I - r e l a t e d h o s p i t a l i z a t i o n s .

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Slide 7 - T a b le 5: D is tr ib u t io n o f P re d ic te d + D is a b le m e n t f ro m TBI in C h ild re n T re a te d a n d R e le a se d f r o m ED F a c ilit ie s - S o u th C a ro lin a , 1 9 9 6 -1 9 9 9

A g e (Yrs) P r o b a b le P o s s ib le U n l ik e ly A l l

N u m . % N u m . % N u m . % N u m . %

0 -4 5 5 2 1 2 6 5 2 2 2 2 9 2 2 4 0 3 4 0

5 -9 3 0 2 8 2 5 1 7 0 3 9 4 1 8 1 5 31

1 0 -1 4 4 6 3 1 0 7 6 1 5 7 9 91 1 7 3 2 2 9

A ll 131 2 3 1 5 5 5 5 0 4 9 3 5 9 5 0 1 0 0

■f P red iction based on an a lg o rith m th a t in co rp o ra ted severity, d ispos ition , and type o f in ju ry . RO C curve C -S tatistic expressing "A ssoc ia tion o f P redicted P robab ilities and O bserved Responses" is 0 .8 6 fo r p ro b a b le a nd 0 .6 8 fo r possib le d is a b le m e n t ca tego ries .

T h e s e f i g u r e s r e p r e s e n t c o n s e r v a t i v e e s t im a t e s .

F o r a d d i t i o n a l i n f o r m a t i o n , c o n t a c t D r . A n b e s a w S e la s s ie ( p l e a s e r e f e r t o t h e l i s t o f

p a r t i c i p a n t s ) .

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Slide 8 - T a b le 6 : D is t r ib u t io n o f P re d ic te d + D is a b le m e n t f r o m TBI in C h ild re n D is c h a rg e d f r o m A c u te C a re F a c ilit ie s - S o u th C a ro lin a , 1 9 9 6 -1 9 9 9

A g e (Yrs) P r o b a b le P o s s ib le U n l ik e ly A l l

N u m . % N u m . % N u m . % N u m . %

0 -4 5 0 9 2 5 0 4 4 2 6 6 4 7 5 6 6 4 0

5 -9 2 0 5 2 0 3 4 8 2 0 0 4 7 4 2 3 2 9

1 0 -1 4 5 2 12 2 2 3 4 8 1 8 7 4 0 4 6 2 2 9

A ll 1 2 2 8 6 7 6 4 7 1 4 5 1 4 5 1 4 5 1 1 0 0

■f P red iction based on an a lg o rith m th a t in co rp o ra ted severity, d ispos ition , a n d type o f in ju ry . RO C curve C -S tatistic expressing "A ssocia tion o f P redicted P robabilities and O bserved R esponses® is 0 .8 6 fo r p ro b a b le a nd 0 .6 8 fo r poss ib le d is a b le m e n t ca tegories .

■ T h e s e f i g u r e s r e p r e s e n t c o n s e r v a t i v e e s t im a t e s .

■ F o r a d d i t i o n a l i n f o r m a t i o n , c o n t a c t D r . A n b e s a w S e la s s ie ( p l e a s e r e f e r t o t h e l is t o f

p a r t i c i p a n t s ) .

4 4

A p pend ix DOther Resources

In a d d it io n to th is re p o r t , th e fo l lo w in g re s o u rc e s ca n h e lp re s e a rc h e rs s e le c t to p ic s f o r re s e a rc h s tu d ie s o f TBI o u tc o m e s in y o u n g p e o p le .

H RSA/M CHB P r in c ip le s fo r M e e t in g th e N e e d s o f th e C hildB r ig h t F u tu re s C h ild re n 's H e a lth C h a r te r

T h ro u g h o u t th is century, p rincip les developed by advocates fo r ch ild re n have been the fo u n d a tio n fo r in itia tive s to im prove ch ildren 's lives. B rig h t Futures partic ipan ts have adopted these p rinc ip les to guide th e ir w o rk and m eet the un ique needs o f ch ild re n and fam ilies in to the 21st cen tu ry.

■ Every c h ild deserves to be bo rn w ell, to be physically f i t and to achieve self-responsib ility fo r good h e a lth habits.

■ Every c h ild and adolescent deserves ready access to coord ina ted and com prehensive p reventive , hea lth -p rom o ting , therapeutic, and rehab ilita tive m edical, m en ta l he a lth and den ta l care. Such care is best p rovided th rough a co n tin u in g re la tionsh ip w ith a p rim ary h e a lth professional o r team and ready access to secondary and te rtia ry levels o f care.

■ Every c h ild and adolescent deserves a n u rtu r in g fam ily and supportive re la tionships w ith o th e r s ign ifican t persons w ho provide security, positive ro le models, w arm th , love and u n co n d itio n a l acceptance.

■ A ch ild 's h e a lth begins w ith the hea lth o f his parents.

■ Every c h ild and adolescent deserves to grow and develop in a physically and psycholog ica lly safe hom e and school env ironm en t free o f undue risk o f in ju ry , abuse, v io lence o r exposure to env ironm en ta l toxins.

■ Every c h ild and adolescent deserves satisfactory housing, good n u tr it io n , a qua lity educa tion , an adequate fam ily incom e, a supportive social n e tw o rk and access to co m m u n ity resources.

■ Every c h ild deserves q u a lity ch ildcare w hen her parents are w o rk ing outside the home.

■ Every c h ild and adolescent deserves the o p p o rtu n ity to develop ways to cope w ith stressful life experiences.

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■ Every c h ild and adolescent deserves the o p p o rtu n ity to be prepared fo r parenthood.

■ Every c h ild and adolescent deserves the o p p o rtu n ity to develop positive values andbecome a responsible c itizen in his com m unity .

■ Every c h ild and adolescent deserves to experience joy, have h igh self-esteem, havefriends, acquire a sense o f efficacy and believe th a t she can succeed in life . She should he lp the n e x t generation develop the m o tiva tio n and habits necessary fo r s im ila r achievem ent.

R e fe re n c e : w w w .b r ig h t fu tu r e s .o r g

B r ig h t F u tu re s is s p o n s o re d b y M C H B , H R S A a n d , in p a r t , s u p p o r te d b y u n re s tr ic te d e d u c a t io n a l g ra n ts

f r o m P fiz e r P e d ia tr ic H e a lth . B r ig h t F u tu re s m a te r ia l is p ro d u c e d b y N C E M C H a n d is n o t c o p y r ig h te d .

Selected Articles from the United Nations Convention on the Rights of the Child

A r t ic le 21. States Parties shall respect and ensure the rights set fo r th in the present C o n ve n tio n to each c h ild w ith in th e ir ju r is d ic tio n w ith o u t d isc rim ina tion o f any k ind , irrespective o f the ch ild 's or his o r her parents’ o r legal guardians’ race, color, sex, language; re lig ion , p o lit ic a l o r o the r op in io n ; na tiona l, e th n ic o r social o rig in ; property, d isab ility , b ir th o r o the r status.

A r t ic le 62. States Parties shall ensure to the m ax im um e x ten t possible the surv iva l and deve lopm ent o f the ch ild .

A r t ic le 2 31. States Parties recognize th a t a m en ta lly or physically disabled c h ild should en joy a fu ll and decent life , in cond itions th a t ensure d ign ity , prom ote self-re liance and fac ilita te the child 's active p a rtic ip a tio n in the com m un ity .

2. States Parties recognize the r ig h t o f the disabled ch ild to special care and shall encourage and ensure the extension, subject to available resources, to the elig ib le ch ild and those responsible fo r his o r he r care, o f assistance fo r w h ich app lica tion is made and w h ich is appropria te to the ch ild 's c o n d it io n and to the circum stances o f the parents or others caring fo r the ch ild .

3. Recognizing the special needs o f a disabled ch ild , assistance extended in accordance w ith paragraph 2 o f the present a rtic le shall be provided free o f charge w henever possible, tak ing in to account the fin a n c ia l resources o f the parents o r others caring fo r the ch ild , and shall be designed to ensure th a t the disabled ch ild has effective access to and receives education, tra in ing , he a lth care services, re h a b ilita tio n services, prepara tion fo r em ploym ent and recrea tion oppo rtun ities in a m anner conducive to the ch ild 's achieving the fu lles t possible

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social in te g ra tio n and in d iv id u a l developm ent, in c lu d in g his or her cu ltu ra l and sp iritua l deve lopm ent

4. States Parties shall p rom ote, in the sp irit o f in te rn a tio n a l cooperation, the exchange o f appropria te in fo rm a tio n in the fie ld o f p reventive hea lth care and o f m edical, psychological and fu n c tio n a l tre a tm e n t o f disabled ch ild ren , in c lu d in g d issem ination o f and access to in fo rm a tio n concern ing m ethods o f re hab ilita tio n , education and voca tiona l services, w ith the a im o f enab ling States Parties to im prove th e ir capabilities and skills and to w iden th e ir experience in these areas. In th is regard, pa rticu la r account shall be taken o f the needs o f develop ing countries.

A r t ic le 2 41. States Parties recognize the r ig h t o f the ch ild to the en joym ent o f the highest a tta inab le standard o f h e a lth and to fac ilities fo r the trea tm en t o f illness and re h a b ilita tio n o f hea lth .States Parties shall strive to ensure th a t no ch ild is deprived o f his or her r ig h t o f access to such h e a lth care services.

A r t ic le 2 81. States Parties recognize the r ig h t o f the ch ild to education and, w ith a v iew to ach ieving th is r ig h t progressively and on the basis o f equal oppo rtun ity , they shall, in pa rticu la r:

(a) M ake p rim ary educa tion com pulsory and available free to all;(b) Encourage the development of different forms of secondary education, including general

and vocational education, make them available and accessible to every child and take appropriate measures such as the introduction of free education and offering financial assistance in case of need;

(c) Make higher education accessible to all on the basis of capacity by every appropriate means;

(d) Make educational and vocational information and guidance available and accessible to all children;

(e) T ake measures to encourage regular attendance at schools and the red u c tio n o f drop o u t rates.

A r t ic le 2 91. States Parties agree th a t the education o f the ch ild shall be d irected to:

(a) T h e deve lopm ent o f the child 's personality, ta lents and m enta l and physical ab ilities to th e ir fu lles t po ten tia l;

A r t ic le 311. States Parties recognize the r ig h t o f the ch ild to rest and leisure, to engage in play and recrea tiona l ac tiv ities appropria te to the age o f the ch ild and to pa rtic ipa te freely in cu ltu ra l life and the arts.

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2. States Parties shall respect and prom ote the r ig h t o f the ch ild to pa rtic ipa te fu lly in cu ltu ra l and a rtis tic life and shall encourage the prov is ion o f appropria te and equal opportun ities fo r cu ltu ra l, a rtis tic , recrea tiona l and leisure activ ity .

R e fe re n c e : w w w .u n ic e f .o rg /c r c /c r c .h tm A c c e s s e d J a n u a ry 2 4 , 2 0 0 1

S e le c te d H e a lth y P e o p le 2 0 1 0 G o a ls a n d O b je c t iv e s

G o a l 1 : In c re a s e q u a l i ty a n d y e a rs o f h e a lth y life .A cce ss to M e d ic a l C a re

O b je c tiv e 1-6 : Reduce the p ropo rtion o f fam ilies th a t experience d ifficu ltie s or delays in ob ta in in g he a lth care o r do n o t receive needed care fo r one o r m ore fam ily

members.O b je c tiv e 1 -15 : Increase the p ro p o rtio n o f persons w ith long -te rm care needs w ho have access to the co n tin u u m o f long -te rm care services.

D is a b il i ty a n d S e c o n d a ry C o n d it io n sO b je c tiv e 6 -1 : Inc lude in the core o f a ll re levan t H e a lth y People 2010 surveillance instrum ents a standardized set o f questions th a t id e n tify “ people w ith d isab ilities.” O b je c tiv e 6 -2 : Reduce the p ro p o rtio n o f ch ild re n and adolescents w ith disabilities w ho are reported to be sad, unhappy or depressed.O b je c tiv e 6 -4 : Increase the p ro p o rtio n o f adults w ith disabilities w ho partic ipa te in social activ ities.O b je c tiv e 6 -5 : Increase the p ro p o rtio n o f adults w ith disabilities repo rting su ffic ien t em o tiona l support.O b je c tiv e 6 -6 : Increase the p ro p o rtio n o f adults w ith disabilities repo rting satis faction w ith life.O b je c tiv e 6 -7 : Reduce the num ber o f people w ith disabilities in congregate care fac ilities, consistent w ith perm anency p lann ing princip les.T arge t: For persons 21 years and yo u n g e r-to ta l e lim ina tion .O b je c tiv e 6 -9 : Increase the p ro p o rtio n o f ch ild re n and yo u th w ith d isabilities w ho spend at least 80% o f th e ir tim e in regular education programs.O b je c tiv e 6 -1 0 : Increase the p ro p o rtio n o f hea lth and wellness and trea tm en t programs and fac ilities th a t provide fu ll access fo r people w ith disabilities.O b je c tiv e 6 -1 1 : Reduce the p ro p o rtio n o f people w ith disabilities w ho repo rt n o t hav ing the assistive devices and technology needed.O b je c tiv e 6 -1 2 : Reduce the p ro p o rtio n o f people w ith d isabilities repo rting e n v ironm en ta l barriers to p a rtic ip a tio n in hom e, school, w ork, or co m m un ity activ ities.O b je c tiv e 6 -1 3 : Increase the num ber o f Tribes, States, and the D is tr ic t o f C o lum bia th a t have pub lic hea lth surveillance and he a lth p ro m o tio n programs fo r people w ith d isab ilities and caregivers.

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M a te rn a l, In fa n t a n d C h ild H e a lthO b je c tiv e 16 -22 : Increase the p ro p o rtio n o f ch ild re n w ith special he a lth care needs w ho have access to a m edica l hom e [fo r the p rov is ion and coo rd in a tio n o f ca re ]. O b je c tiv e 16 -23 : Increase the p ro p o rtio n o f T e rrito ries and States th a t have service systems fo r ch ild re n w ith special hea lth care needs.

M e n ta l H e a lth a n d M e n ta l D is o rd e rsO b je c tiv e 18 -7 : Increase the p ropo rtion o f ch ild ren w ith m en ta l h e a lth problems w ho receive trea tm ent.

P u b lic H e a lth In fra s tru c tu reO b je c tiv e 2 3 -2 : Increase the p ro p o rtio n o f Federal, T rib a l, S tate and Loca l hea lth agencies th a t have made in fo rm a tio n available to the pub lic in the past year on the Leading H e a lth Ind ica tors, H e a lth Status Ind ica tors, and P rio rity D a ta Needs. O b je c tiv e 2 3 -5 : Increase the p ropo rtion o f Leading H e a lth Ind ica tors, H e a lth Status Ind ica to rs , and P rio rity data Needs fo r w h ich data-especia lly fo r select popu la tions-a re available a t the T rib a l, State, and Local levels.

R e fe re n c e : h t tp : / /w w w .h e a lth .g o v /h e a l th y p e o p le /D o c u m e n t . A c c e s s e d J a n u a ry 2 5 , 2 0 0 ; o r U .S .

D e p a r tm e n t o f H e a lth a n d H u m a n S e rv ice s . H e a lth y P e o p le 2 0 1 0 . 2 nd e d . W ith U n d e rs ta n d in g a n d

Im p r o v in g H e a lth a n d O b je c t iv e s f o r Im p ro v in g H e a lth . 2 v o ls . W a s h in g to n , D C : U .S . G o v e rn m e n t

P r in t in g O f f ic e , N o v e m b e r 2 0 0 0 .

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A p pend ix EOverview of Traumatic Brain Injury Surveillance Activities Funded By The Centers for Disease Control and Prevention

I. B as ic S u rv e il la n c e : D e f in in g th e M a g n itu d e o f th e P ro b le m , Id e n t ify in g C a u s e s a n d H ig h R isk G ro u p s

In 1995, C D C funded T B I surveillance efforts in 4 states and developed Guidelines fo r Surveillance o f Centra l Nervous System In ju ry .3 These surveillance efforts expanded w ith the im p le m e n ta tio n o f P ub lic Law 104'166, the T ra u m a tic B ra in In ju ry A c t o f 1996. U n d e r the T B I A c t, the C D C has developed a u n ifo rm reporting system to answer questions about the inc idence and causes o f T B I deaths and hospita lizations. T he surve illance program cu rre n tly supports data co lle c tio n in the fo llow ing 15 states:

A l a s k a C a l i f o r n i a M a r y l a n d N e b r a s k a R h o d e I s la n d

A r i z o n a C o l o r a d o M i n n e s o t a N e w Y o r k S o u t h C a r o l i n a

A r k a n s a s L o u i s i a n a M i s s o u r i O k l a h o m a U t a h

II. O u tc o m e s S u rv e illa n c e : T h e C o lo ra d o a n d S o u th C a ro lin a T ra u m a tic B ra in In ju r y F o llo w -u p S ys tem sIn 1995, C D C funded a fo llow -up study in C o lorado to describe T B I-re la te d d isab ility , use o f services, and o the r outcomes. A s im ilar p ro jec t was begun in S ou th C aro lina in 1998 in c lu d in g people w ith T B I aged 15 years or older. These projects:

1. Each year, select a representative sample o f people id e n tifie d by surveillance w ho have been hospita lized and survived w ith a T B I

2. Locate each person in the sample w ith in one year o f th e ir in ju ry3. C o n ta c t them and ob ta in consent to do a te lephone in te rv iew4. In te rv ie w each person about a w ide range o f outcomes and service needs

(approx im ate ly 40 m in u te s ); proxies are in te rv iew ed i f the person is unable to pa rtic ipa te themselves

5. T ra c k each person and in te rv ie w them again at 2 and 3 years pos t-in ju ry6. Ana lyze and repo rt the results

P ro ject S tr e n g th s■ Population-based find ings w ith the po ten tia l to generalize results to a ll people aged

16 years o r o lder w ho have been hospita lized w ith a T B I■ W id e range o f outcomes assessed using b o th standardized and nonstandardized

measures■ Focus on “ m acro” outcomes re levant to policy-m akers■ P o ten tia l to b u ild a case fo r the needs o f people w ith T B I■ T h e a d d itio n o f a com parison group to the SC study to be tte r delineate the

im pac t o f T B I

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Project Limitations■ O utcom es are assessed in lim ite d deta il.■ S e lf-report may n o t be va lid among people w ith decreased awareness o f problems.■ Loss to fo llo w -u p is h ig h (approx. 35% at one year, 10-15% at years 2 and 3).■ D o n o t inc lude people w ith less severe T B I seen in the E D or n o t rece iv ing

m ed ica l care.■ D o n o t inc lude ch ild re n and adolescents.

III. F u tu re D ire c t io n s : A d d in g C h ild re n a n d A d o le s c e n ts to th e TBI O u tc o m e s S u rv e il la n c e P ro je c tsO b ta in in g popula tion-based T B I outcomes data fo r ch ild re n and yo u th is a h ig h p r io r ity fo r the A d v iso ry C om m ittee o f the N a tio n a l C en te r fo r In ju ry P reven tion and C o n tro l, the B ra in In ju ry A ssoc ia tion and a w ide range o f experts and professionals w ho pa rtic ipa ted in the C D C-sponsored T B I in Pub lic H e a lth M ee ting in A p r i l 1999. T he T B I A c t R eau tho riza tion o f 2000 also h igh ligh ts i t as a p r io r ity ac tiv ity .